tag:blogger.com,1999:blog-26061434872261691712023-11-15T23:58:54.106-08:00Mom*PCDH19 Epilepsy - Foster Care - Adoption - LifeMom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.comBlogger37125tag:blogger.com,1999:blog-2606143487226169171.post-8966544151951298292017-03-29T09:34:00.000-07:002017-03-29T09:38:05.266-07:00I've Moved!I'm still writing about epilepsy, adoption, parenting and life. I'm just doing it from a fancier internet home. You can find me at <a href="http://momwithanasterisk.com/" target="_blank"><span style="color: blue;">Mom*</span></a> and on <a href="https://www.facebook.com/momwithanasterisk/" target="_blank"><span style="color: blue;">Facebook</span></a> or <a href="http://instagram.com/momwithanasterisk/" target="_blank">Instagram</a>. Come see what's new!<br />
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www.momwithanasterisk.comMom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-33907182942710474012016-05-07T23:07:00.000-07:002016-05-07T23:53:18.246-07:00Thankful for Tea and Motherhood<div class="separator" style="clear: both; text-align: center;">
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Last weekend I was invited to an afternoon tea for moms at a
friend’s home. I’ll admit that I was a little, or maybe completely, out of my
element. I’m a true Texan girl so I drink more tea than water but I drink it
the right way: sweet and iced. I wasn’t
really sure how to act at a table full of fancy dishes, kettles and a box full
of fancy teas. I didn’t break or spill anything though so I call that a
win. (Looking back I think I have been
spending too much time with my children when that counts as a win.)<o:p></o:p></div>
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After tea, everyone moved into the living room for a Bible
study. We settled into Ann’s big couches
with ice cold cucumber water and sat quietly while she opened with a prayer. It
was a simple prayer but something in it struck me. Of course she thanked God
for the chance to spend an afternoon with friends and learning about His word
but then she thanked Him for motherhood. <o:p></o:p></div>
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Thanking God for motherhood really struck me. We are often told to give thanks for our
children and our families. Even on the worst days, my kids are a blessing like
no other. Each of them is an answer to a desperate prayer. I think there is a difference between being
thankful for my kids and appreciating this amazing identity that is so much a
part of me. <o:p></o:p></div>
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Motherhood did not come easy to me. I remember hours spent
praying in the rocking chair of the room that would become our nursery for the
children I was yet to meet. I remember
bitter tears and living in the story of Hannah. I also remember what it was
like to finally be accepted into the global club of women who understand what it
means to love a tiny human with more passion than you ever thought possible. <o:p></o:p></div>
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I know many others who have lost babies or waited years for
children who never come. I know women
who have chosen to share their homes and hearts with other women’s children and
have had their motherhood questioned. I
know others for whom parenting was thrust upon them against their will or ahead
of their schedule but they have risen to the occasion. <o:p></o:p></div>
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Mothering has been the most rewarding and the most
devastating thing I have ever done. It has been both the easiest thing and the
hardest. Motherhood is not simply something I do. It is a part of me. It is a
piece of my identity. I am a mother in the same way that I am a woman and a
Christian and a Texan. Like every other permanent identity, motherhood shapes
the way that I see the world and interact with the people in it. <o:p></o:p></div>
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There are days when I struggle as a mom. There are times
when I feel inadequate or I am convinced that someone else is better suited to
this brood. It is easy to become
overwhelmed by the daily responsibilities and the constant pressures that come
along with parenting. Some days I think I need to be reminded that
motherhood is a gift. These children,
this family, and this entire identity are blessings. I’m thankful than that. <o:p></o:p></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-30582035882349548742016-03-13T13:23:00.000-07:002016-03-13T13:24:09.788-07:00Plastic Smiles<div class="MsoNormal">
My friend Brooke recently published a book and I had the
chance to review it for her. I’ll admit
that I’m not usually a fan of fiction but I actually enjoyed it. The book is called the Wizard of god and it
follows a girl named Grace on a journey through a spiritual landscape that is both
fantastical and eerily familiar. Like
the classic story, our heroine amasses a band of misfits and heads for a far
off place to find a person with all the answers. Along the journey that encounter stereotypes
of the church as it exists today, with all extremes being represented. <o:p></o:p></div>
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As someone who has been wounded by churches and Christians
in the past, there were several chapters that really resonated with me but
there is one particular scene that I’ve thought about several times over the
past several days. When Grace finally reaches her destination, she and her
companions are given plastic training smiles which they instructed to wear until
their facial muscles adjust to smiling all the time. The group finds themselves through this
giant, fancy compound filled with beautiful people and their fake smiles with
all of their pain hidden behind masks. <o:p></o:p></div>
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I thought about that scene as I walked into the elementary
school for Muffins with Moms last week with a plastic smile on my face and a
bitemark from one of my children on my hand.
I greeted other parents in the hallway like I hadn’t spent the last hour
trying stop a meltdown. I sat at that
cafeteria table and tried to overcome the horrible morning to connect with my
kids before they ran off to class and thought about how exhausting it was but I
kept my smile on anyway. <o:p></o:p></div>
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I continued to think about that scene off and on throughout
the week because we’ve had some really hard days at our house lately. It is always complicated for my kids when
they see their biological family but we thought they could handle an extended
visit with one of their siblings because of some extenuating circumstances. Instead we spent about two weeks in absolute
crisis mode as attachment issues reared their ugly heads. I kept my smile on though, at least in public. <o:p></o:p></div>
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I thought about that scene after church last Sunday too. The
girl child screamed for most of the morning and the entire drive to
church. My nerves were frayed and I was
tired. When I walked the boys to class,
another mama asked me a question about an issue that we have faced with one of
our kids. Her child is working to
overcome similar challenges and she wanted advice. I took a deep breath and considered putting
my smile back on to tell her how it’s done but I left chose to leave it in my
pocket instead. I told her I was empty
and that as much as I wanted to help her, we would have to talk strategies
another day. To my surprise, instead of
a glaring, judgmental sanctimommy, I found another mother who struggles some
days too. <o:p></o:p></div>
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I realized in that moment that the best thing about taking
off your mask is that others lay theirs down too. I have to tell you that felt amazing. I needed that moment in the church hallway
of connecting with another mother who can see me struggle without thinking I’m
Medusa. <o:p></o:p></div>
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In light of my newest revelations, I thought about that
scene and some of the moments when I took the smile off to let my face and soul
relax. I started a new job that I am
really excited about. The night before,
I sent my person a message that basically said “this might be imposter syndrome
but I’m pretty sure I’m going to be completely incompetent and fall on my face tomorrow.”
Since she’s an amazing human, my friend encouraged me and I felt empowered when
I arrived at the office the next morning. Taking my mask off that night allowed me to connect
with someone so I didn’t need to fake it; I could smile for real. <o:p></o:p></div>
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I don’t think it’s realistic to pretend like I could go
through life and never fake another smile.
There are situations where we simply have to grin and bear it. I see benefits to laying our masks down
whenever it is safe to though. I think
when we take our fake smiles off, it lets our real ones come out. They may not be as flashy and gaudy. They may even be weak but they are
authentic. They may coexist with tears
but they exist in the flesh instead of plastic when we are allowed to share our
truth with the people around us. <o:p></o:p></div>
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Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-8443823168718153712016-02-10T19:38:00.001-08:002016-02-10T19:38:36.624-08:00Leave the diagnosis at home this Valentine’s Day<div class="MsoNormal">
If you are the parent of a child with special needs, you are
likely very well aware of the divorce statistics for our cohort. Our marriages are significantly more likely to
end than our peers with healthy children. It just seems cruel that the disorders that
try to steal our children attack our marriages too. The truth is though we can experience stress
levels similar to those of soldiers in combat and that puts strain on even the
healthiest relationships. Our marriages aren’t doomed though. We just need to understand what we are facing
and protect our relationships while we weather the storm. <o:p></o:p></div>
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I think that most couples initially go one of two ways when
faced with a crisis like a child’s diagnosis: denial or obsession. Many people feel so overwhelmed by what they
are facing that they avoid it at all costs.
Those couples may fight about trivial things or become overly involved
in other activities because facing the threat to their child is just too
terrifying. Others, like my husband and
I, become laser focused on the medical situation. It seems easier to juggle the advice of
multiple specialists, a whole new drug regimen and a child with a very
uncertain future when you block everything else out. For a little while that works but in the long
run, it just isn’t sustainable. <o:p></o:p></div>
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When my daughter first started having seizures it was all
consuming. Everything we did revolved around epilepsy. Every conversation was
related to her health. Every nightmare
consisted of her seizing until her little body couldn’t seize any more. Nothing
mattered but keeping her alive. We were
in survival mode. I remember a conversation I had with Curt one of the times
that we were in the hospital. I told him
how impressed I was that we had been able to fall together instead of apart. I didn’t mean that we were a super couple who
never faltered. We just felt so little support at the time that we were forced
to lean on each other while we went through hell always thinking that the storm
would pass and we would go back home to our normal lives.<o:p></o:p></div>
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When the dust finally started to settle and we came home to
this life that was far from normal, we faced a whole new challenge; our family
had to learn to talk to each other again.
It wasn’t that we weren’t speaking at all. It just felt awkward to talk about anything
that wasn’t related to epilepsy.
Suddenly, telling my husband about the woman who was a jerk at school
seemed really trivial. Bragging about
our son’s report card at the dinner table felt wrong when his sister might
never learn to read. We used to sit up
and talk for hours but every interaction had somehow shifted into a medical
conference. Even though he was always
right there with me, I missed the connection to the man that I needed the most.<o:p></o:p></div>
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After weeks and weeks of nights that were spent at the
hospital or lying beside our seizing princess, we were finally able to sneak
away by ourselves for a few hours. As we
pulled out of my parents’ driveway after dropping of the kids, we made a
decision that I think is a large part of why we are still together three years
later. We decided not to take epilepsy
on our date. <o:p></o:p></div>
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When we decided not to talk about Alyssa’s health that
evening, it freed us up to talk about everything else we had been
neglecting. We went to a steak house and
talked like we used to. All of the day
to day conversations that had been deemed too trivial to mention were up for
discussion. The longer we spoke the more
the murky medical haze seemed to life and we reconnected in a way that my soul
desperately needed. I don’t remember
what he was said that night, but I vividly remember looking across the table
and breathing deeply, knowing that we were going to be ok. When we picked the kids back up, I felt like
a weight had been lifted. We still faced
incredible odds with Alyssa but I knew we were facing them together. </div>
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<o:p></o:p></div>
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If you and your partner avoid the giant medical elephant in
the room, you might consider setting aside a specific time to discuss it. Sit down together and don’t get back up until
you have confronted the fears and made a plan to fight this fight together. However, if you feel like your partnership
has become more about your child’s medical needs than about romance, I highly
recommend that you take a date this Valentine’s Day and leave the diagnosis at
home. Give yourselves a chance to
reconnect with each other without focusing on the disorder. It will still be there when you get back but
it might not look as overwhelming when you know that you aren’t fighting it
alone. <o:p></o:p></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-83262997992599514362016-01-29T08:14:00.000-08:002016-01-29T08:54:22.400-08:00January Rules<div class="MsoNormal" style="text-align: left;">
In the decade since I had my first son, I have come to
realize that parenting is mostly just winging it. I might look like I have it
together at this point but that’s just because I’ve perfected a Donald Trump
style comb over to cover the spot where I pull my hair out. One of the things
that surprised me most after having kids was how many new rules I would have to
make up along the way. I don’t know if it’s just my kids but basics like play
nice and clean your room don’t cut it here. January is especially trying
because they have so much new <s>crap</s> great stuff to play with that they
got last month. So while the rest of the world is busy working on their
resolutions, I’m over here making new rules in an attempt to keep the house
from imploding. Here’s a few of the newest additions:</div>
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<o:p></o:p></div>
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<b>Do not fly your new
drone in my room while I am sleeping.<o:p></o:p></b></div>
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I am not responsible for any damage caused when I wake up
screaming and bat the flying demon monster away from my face. <o:p></o:p></div>
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<b>Only Elsa <u>dolls</u> get
to stand on your new Frozen castle like she did in the movie. <o:p></o:p></b></div>
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Little girls wearing Elsa dresses are not to climb up there. If you break your
face, I will sell your new castle to pay for the hospital bills. Well, I
probably won’t but I will definitely dream about it. Save us both the trouble
and keep your feet on the floor.<br />
<br />
In my defense, I assumed this was covered under the rule about not climbing on the roof even if you're wearing Buzz Lightyear wings. I realize now that the point of this climbing is to sing dramatically, not to fly like a spaceman. Those are completely different. That was my mistake. The new rule has been officially added. <o:p></o:p></div>
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<tr><td class="tr-caption" style="text-align: center;">Well I guess Hello Kitty and My Little Ponies are OK. Basically just no humans allowed on the cardboard balcony.</td></tr>
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<b>Do not build Lego machines that run on Barbie doll hearts.<o:p></o:p></b></div>
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If you want your contraption to take over the world, I’m good with that. If you feel the need to feed that thing your sister’s toys, we have a problem. It’s not just about stealing her stuff either. I’ve seen Toy Story. I know what happens to kids like Sid.</div>
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<b>Do not put any
(more) baby puppies in your stuffed animal net. <o:p></o:p></b></div>
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Also, little boys are not allowed in the stuffed animal net
even if they are pretending to be a teddy bear.<o:p></o:p></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7gAe9bBY6mqZPhaYQYTYQVnctaYLzIw1WGzcdT1hC-cuwbQ8_pqBJeDWO5YwBE-qWSrxoVXusPb4huT1r5u0B7VAWE4880yJkU9aeBfNirlt_zOSPOh1FCcCYmONf3iywF4Wzs3kU74uu/s1600/IMG_9956.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7gAe9bBY6mqZPhaYQYTYQVnctaYLzIw1WGzcdT1hC-cuwbQ8_pqBJeDWO5YwBE-qWSrxoVXusPb4huT1r5u0B7VAWE4880yJkU9aeBfNirlt_zOSPOh1FCcCYmONf3iywF4Wzs3kU74uu/s320/IMG_9956.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Smith Wigglesworth. His butt wiggles when he walks. </td></tr>
</tbody></table>
<div class="MsoNormal">
<b>Your toys are not
allowed to play guitar after bedtime. <o:p></o:p></b></div>
<div class="MsoNormal">
Obviously I believe you that it was your minion rocking out.
You were just laying in bed as innocent as a lamb. Mommy is tired though and
even Bob has to obey the rules. If I hear any more music coming out of your
room before the sun comes up, he will be spending the entire night in time out.
<o:p></o:p></div>
<br />
<div class="MsoNormal">
Of course these are in addition to our normal rules like
don’t ride the dog, no farting at the table and we don’t use nail polish on the
walls or furniture. I would like to point out that none of these rules were in
the What to Expect books. I thought we would need the standard rules to help
our little angels grow into respectable adults. Instead, it seems like every
new ordinance is just aimed at keeping this circus out of the ER or preventing
major property damage. Please tell me I’m not alone in this. What new rules
have you had to add in your house this month?</div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-35417810430721172732016-01-19T22:27:00.002-08:002016-01-19T22:27:23.377-08:00Dear Daughter: It’s OK to hurt.<div align="center" class="MsoNormal" style="text-align: center;">
<i>Tonight I sat on the couch with my broken little girl and held her
while she cried. Tonight we watched a movie and held a puppy while we waited
for the grief to subside. Tonight, once
again, I told her that it’s OK to hurt.<o:p></o:p></i></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
As a mother, my instinct is to kiss boo boos and dry
tears. It hurts me to see my children
hurt. I want to pull them to my chest
and keep them far from any one or any place that would ever do them harm. The problem is that my children came from the
place of harm. My children were born to
the family that hurt them. I can do
everything in my power to change their present and future but I can’t erase
their history.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Adoptive families often struggle with how much contact to
have with their birth families. Open
adoptions are a great option for many people but in cases where children were
adopted from foster care there are often safety concerns and painful histories
that have to be taken into consideration.
My husband and I have chosen not to force contact with our kids’
biological parents until our kids ask for it.
They know that they are adopted and when the time comes that they want
to reach out, assuming that it is safe and healthy, we will support them. In the meantime, we continue to cultivate a
relationship with their biological siblings.
Those kids love my children and did not do anything to deserve their
family being torn apart. We promised
them that we would work hard to maintain their relationships with our kids and
we have stood by that. It hasn’t been
easy though. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This weekend we had a visit with some of Bradley and
Alyssa’s siblings. The kids looked
forward to it for days and Alyssa literally jumped up and down and started
dancing in the middle of the restaurant when she saw them pull up. She spent an hour and half with her sister,
T, taking turns braiding and rebraiding each other’s hair. They have a special connection and adore each
other even though they are not able to connect as often as they would
like. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When it was time to go, Alyssa clung to T like her life
depended on it and she sobbed. Her
little heart broke like it did when she first lost her birth family and like it
does every time we have to say good bye.
Even though she knows that she will see them again, it hurt. Even though she was promised a phone call in
the next few days, it hurt. The whole
thing just hurts. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I watched my husband scoop her up in his big, gentle arms to
carry her to the car and I wondered for a moment if it was worth it. It makes no sense to bring your child to a
visit knowing that she will leave in tears. The mama bear in me wants to hole
up in a cave and never come back so that she won’t hurt again. Instead, I looked her in the eyes and told
her that it was ok to be sad about leaving.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we got home we cuddled on the couch and watched a movie
while she tried to sort things out. That
night she raged and said she hated me.
In the morning she asked if I remembered the time that she was really
sad after seeing her sister. I told her
again that it’s ok to hurt sometimes.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I try not to tell Alyssa that it will be ok because I don’t
know that it will. I don’t attempt to
stop the tears because they exist for a reason.
It would not be fair for me to deny that her truth is painful. Instead, I give her permission to grieve and
I sit with her until the storm passes.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFC_Yp1pQ-w1AwNz5-gg4siqGDtBV00EhJbqIDVDUH9vKy3Z2wXcfqSOm0Iscs_ZGRLk4qfjGrrplWCbNLgtB1y0aRoL5Ox2by_oWg_3WjbvuwwT6befVT6wmz2GNYUJf3YXq5JQZ9F4ex/s1600/Untitled+design+%25281%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFC_Yp1pQ-w1AwNz5-gg4siqGDtBV00EhJbqIDVDUH9vKy3Z2wXcfqSOm0Iscs_ZGRLk4qfjGrrplWCbNLgtB1y0aRoL5Ox2by_oWg_3WjbvuwwT6befVT6wmz2GNYUJf3YXq5JQZ9F4ex/s320/Untitled+design+%25281%2529.png" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I want my kids to grow up knowing that they don’t always have
to run from pain. I want my children to
learn to love bravely and that means embracing risk. We mediate that risk by preparing for visits,
planning downtime afterwards and monitoring closely what is said but we know
that seeing their siblings may open up old wounds. If you aren’t intimately acquainted with
adoption, that may seem reckless. We understand though that the benefit of love
is greater than the cost.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over the past few years I have had to learn the lesson that
Alyssa is learning now. Sometimes love
hurts but it is worth it. Foster
children may leave and take a piece of your heart but it is worth it because what
remains is better than the whole you had before. Friends may walk away but it is still worth
it to trust and feel connection with others.
The epilepsy could win but it is worth it to love Alyssa. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is better to
love and hurt than to never love. Painful goodbyes mean that you had a chance to
say hello. Even if it hurts to leave, an
evening spent braiding your sister’s hair is worth it. It would be easier to
walk away and hope that she forgets about her birth family but that’s not what
is best for my daughter. I want her to
know that even if they can’t grow up together like they should have, loving
your siblings is worth it. It’s ok to hurt because that means that you loved.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Let's continue this conversation on <a href="https://www.facebook.com/momwithanasterisk/" target="_blank">Facebook</a> and in the comments below.</div>
<div class="MsoNormal">
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVSMDFKmlHcO9kj6ijnkVehnkK99MGO__59S-9NgFjqC9N6quBlzuWEl6cJKWI0YTlN-rLBvGRu9E1jOgI4zZJfeBzmRjP3t-qPSrtxhQdMgghZibx7qQ93DWyP9OCwlnTXWg1erkXi65A/s1600/Tonight+I+sat+on+the+couch+with+my+broken+little+girl+and+held+her+while+she+cried.+Tonight+we+watched+a+movie+and+held+a+puppy+while+we+waited+for+the+grief+to+subside.+Tonight%252C+once+again%252C+I+told+her+that+it%25E2%2580%2599s+ok+to+hurt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVSMDFKmlHcO9kj6ijnkVehnkK99MGO__59S-9NgFjqC9N6quBlzuWEl6cJKWI0YTlN-rLBvGRu9E1jOgI4zZJfeBzmRjP3t-qPSrtxhQdMgghZibx7qQ93DWyP9OCwlnTXWg1erkXi65A/s320/Tonight+I+sat+on+the+couch+with+my+broken+little+girl+and+held+her+while+she+cried.+Tonight+we+watched+a+movie+and+held+a+puppy+while+we+waited+for+the+grief+to+subside.+Tonight%252C+once+again%252C+I+told+her+that+it%25E2%2580%2599s+ok+to+hurt.jpg" width="320" /></a></div>
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Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-91849250361513153242016-01-12T08:57:00.000-08:002016-01-12T09:11:15.160-08:00The Difference Between Mommy Guilt and Mommy Shame<div class="MsoNormal" style="text-align: left;">
It seems like every other day another article comes out
about mommy guilt. A woman whom we all relate to discusses how overwhelmed she
felt by thoughts that she was never doing enough for her kids, partner, house,
job, or life. Usually there was a turning point where she realized that she was
tilting at windmills and trying to achieve the impossible when what she really
needed to do was give herself grace and embrace the cheerios on the floor. Many
moms applaud this kind of writing because it tells us that other people are
imperfect so it might be ok if we don’t do everything the sanctimommies claim
they do.</div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I’ll admit that as a completely imperfect mom, I am sometimes
drawn to these stories. It is nice to read about other women who are just as
exhausted as I am at the end of the day and who have to remind themselves to
look interested during yet another 30 minute monologue on Minecraft. I like the
idea that there are other moms who fantasize about burning the laundry pile and
sometimes yell at their kids. In general, I think that women need more grace to
be human instead of more pressure to live up to standards that are often
contradictory and impossible. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Typically, these pieces end with a declaration that the mom
is completely eschewing all the guilt and refusing to allow it any place in her
life. We are supposed to cheer at this new found enlightenment but that is
where the professor in me pokes her head up. I teach Introduction to Psychology
to first year college students and I work hard to teach them that all of our
emotions have a purpose. Our feelings are there to help us understand our world
and what people or events mean to us. Anger is a natural response to a
violation, sadness tells me that I have suffered a loss and fear says that I am
in danger. Like every other feeling,
guilt exist for a reason. Go ahead and clutch your pearls but I’m going to say
it, mommy guilt is not always a bad thing. Guilt lets me know when I may have
done something wrong. When I feel guilty
for something that I am actually responsible for, and I feel it in an
appropriate intensity, I can learn from my mistakes and become a better parent.
The problem is sometimes mommy guilt turns into mommy shame and that is
harmful.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Brene Brown is a researcher who has spent years studying some
of our most difficult emotions. She teaches that there is an important
difference between shame and guilt which many people miss. Guilt tells us that
we have done something bad while shame tells us that we are bad. That
distinction is important because it influences how we respond to our inner
dialogue. Guilt encourages me to think about what I did and how I can repair
it. Shame often causes us to shut down more and isolate farther.<o:p></o:p></div>
<div class="MsoNormal">
Imagine that you are making dinner at the end of a horribly
long day. You are tired and frustrated and just trying to make it till bedtime
so you can crash on the couch with wine, popcorn and Scandal. Sensing this,
your kids go into overdrive and push every button until you snap. Then they
look at you with those big watery eyes like you just broke their little hearts.
What do you then? What are the voices in your head saying for the rest of the
night? Do your thoughts sound more like shame or guilt?<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
Shame says: I am a horrible mother.
I ALWAYS yell at them. I mess up everything. I am destroying my kids. I want to
put them in bed now and hide. I wish I wasn’t such a bad a mom. I just can’t do
anything right. I wish I was more like that other mom who has everything
together and never struggles. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
Guilt says: I made a mistake. I was
tired and upset and I took it out on them. I need to apologize to my kids. Next
time I will try taking a few minutes alone to decompress after work before
making dinner. I love my kids and also I am human so I mess up sometimes. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Do you hear the difference there? When shame speaks, it can
feel overwhelming. Guilt recognizes that there is a problem but that problem
does not define you. You made a mistake but you are not one. Guilt is not
something we have to run from because it teaches us to be better parents,
partners and people. Shame on the other hand is rarely helpful. Shame makes the
problem bigger while tearing you down. It takes time and effort but you may
find yourself experiencing more peace as your learn which voice to listen
to. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next time that mommy guilt or mommy shame are competing
for space in your life, try thinking through these questions: <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Is this
something I should feel guilty about?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Am I
remembering to focus on what I DID instead of who I AM?</div>
<div class="MsoNormal">
<br />
Do I
feel more guilt than I should about what I did?</div>
<div class="MsoNormal">
<br />
How would I like to address this
situation differently in the future or make repairs with the person I hurt?<br />
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<o:p></o:p></div>
How can I make repairs and extend
grace with myself? <br />
<div class="MsoNormal" style="text-indent: .5in;">
<o:p></o:p></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF2ZfD33rb63ciJZ773bppq5c6Xt6MyvbyjNIh-tTwHhU5Zi7y5i-ZYDKncGhPLMJGZDoKojvVh-_A5VzUU0LFn2YbX60-bJ3W4ndx_FduZX04F42EN651UKRuKzPifQLzoX3R9JAWcNC4/s1600/Is+it+shame+or+guilt+questions-.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF2ZfD33rb63ciJZ773bppq5c6Xt6MyvbyjNIh-tTwHhU5Zi7y5i-ZYDKncGhPLMJGZDoKojvVh-_A5VzUU0LFn2YbX60-bJ3W4ndx_FduZX04F42EN651UKRuKzPifQLzoX3R9JAWcNC4/s400/Is+it+shame+or+guilt+questions-.png" width="266" /></a></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br />
<span style="font-family: "Calibri",sans-serif; font-size: 11.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Most
moms struggle with guilt and shame at some point. We put so much pressure on
ourselves to be the perfect mom that it can feel overwhelming. Learning to set realistic standards for
ourselves can help us to resist the shame and listen to guilt when it says that
there is something we can tweak. Let’s continue this conversation in the
comments below or on my <a href="https://www.facebook.com/momwithanasterisk/" target="_blank">facebook </a>page. </span><br />
<span style="font-size: x-small;"><br /></span>
<span style="font-size: x-small;"><br /></span>
<span style="font-size: x-small;">*Note: We all feel guilt and shame from time to time.Often we feel better when we talk with friends or work on changing our thoughts. If negative emotions start to feel overwhelming or you are afraid you might hurt yourself or someone else, it may be time to speak to a therapist. You can search for one near you at this <a href="https://therapists.psychologytoday.com/rms/?utm_source=bing&utm_medium=cpc&utm_campaign=General%20Terms&utm_term=psychology%20today&utm_content=Therapist%20General%20Terms" target="_blank">website</a>. Remember that there is no shame is getting help.</span></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-57296266524416129992016-01-02T19:41:00.002-08:002016-01-02T19:43:10.276-08:00Disaster Relief in Garland<div class="MsoNormal">
<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: left;">
My husband and I are Jeepers. We’re not hardcore Jeepers because I have
(what he considers to be) an irrational fear of falling off cliffs. But, he has a really cool Jeep and we look awesome
when we drive around with the top off. Recently,
we’ve gotten involved with the North Texas Jeep Club. I first learned about them last winter when
they made the news for pulling stranded motorist out of ditches all over the
metroplex during the really bad ice storm. I liked the idea of a group that
could be playing in the mud one day and saving people the next. </div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWjpXlTAxIY4TcgszUACJTXL7S0gRxoyLLqc5bUnQgusdwOYAk6xpPpsLsHW60DX8gxqb6kuwNoH8K_NU9su0HcwHqzdIeMkXnhjwqVusxwcz39aotGGLD_M5J6zNtXt5w9wh6AgazvFs9/s1600/20160102_141739+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWjpXlTAxIY4TcgszUACJTXL7S0gRxoyLLqc5bUnQgusdwOYAk6xpPpsLsHW60DX8gxqb6kuwNoH8K_NU9su0HcwHqzdIeMkXnhjwqVusxwcz39aotGGLD_M5J6zNtXt5w9wh6AgazvFs9/s320/20160102_141739+%25281%2529.jpg" width="320" /></a></div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Earlier this week, NTJC began discussing how we could help
the people affected by the tornados in Garland.
If you don’t know, on December 26<sup>th</sup>, an EF4 tornado ripped
through several Dallas suburbs damaging over 600 buildings and killing 11
people while injuring countless others.
We knew we had to help so this morning about 25 Jeeps, along with their people,
rolled into Garland and we got to work.<o:p></o:p></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj69mUCzPIiJiFWdXEbmc3PebcGLxSRyPM5vz_aJGvY_ukBBqGm93bEUe__aCCerwMcrD4lVqxqJvwKob7jYjyUx7pbDnIA6gngBgkNwMx4hneHSvFIGZavnhR7C0DdSKet6OEk_LVYj5_N/s1600/20160102_154346.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj69mUCzPIiJiFWdXEbmc3PebcGLxSRyPM5vz_aJGvY_ukBBqGm93bEUe__aCCerwMcrD4lVqxqJvwKob7jYjyUx7pbDnIA6gngBgkNwMx4hneHSvFIGZavnhR7C0DdSKet6OEk_LVYj5_N/s320/20160102_154346.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This trailer park was one of the hardest hit areas.</td></tr>
</tbody></table>
<div class="MsoNormal">
It’s surreal to be driving along the highway like everything
is normal and then suddenly find yourself in a warzone. I have never been in a place with so much
devastation. We spent the day clearing
debris from yards and helping families load up what valuables that they could
salvage. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5iwgnmeFTRs8QX_8zWkFcdfizZT3yPOoUwQpKo7QYUym7WepnFBzaM-5lg2NtSy-_sp-27TUA9HjuUtDBDmTn4ERTgHfTGeCD7AeGWBaFdvoh0ytlJTtr3Xrx60OAKU3ANDFbMjoiF2bL/s1600/20160102_120305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5iwgnmeFTRs8QX_8zWkFcdfizZT3yPOoUwQpKo7QYUym7WepnFBzaM-5lg2NtSy-_sp-27TUA9HjuUtDBDmTn4ERTgHfTGeCD7AeGWBaFdvoh0ytlJTtr3Xrx60OAKU3ANDFbMjoiF2bL/s1600/20160102_120305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5iwgnmeFTRs8QX_8zWkFcdfizZT3yPOoUwQpKo7QYUym7WepnFBzaM-5lg2NtSy-_sp-27TUA9HjuUtDBDmTn4ERTgHfTGeCD7AeGWBaFdvoh0ytlJTtr3Xrx60OAKU3ANDFbMjoiF2bL/s320/20160102_120305.jpg" width="320" /></a></div>
<br />
<div class="MsoNormal">
When we first arrived and parked at the base, a man named
Abram from <a href="http://www.renovaco.org/" target="_blank">Renova Community Organization</a> drove us to our first work site. He told me that watching the Jeeps pull up
was like seeing the cavalry arrive. He’s
right; we do make quiet an entrance. It
felt like we were cavalry too. We all
worked hard and within a few hours we had completely cleaned up several
yards. It felt like we really made a
difference there. <o:p></o:p></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGOM15bBUyz4oUNH8j1CE_GBxAAlCSTNWaaoENi5X7cyXPGr3EDOOniJaO8zzusGqNxZCdZBTLDIuui80n6FM5fkhCZctxQcFTahs1NgNhRUsBqWUvDErvRGpfAubflEHTkizVCFZLsTuM/s1600/20160102_132310.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGOM15bBUyz4oUNH8j1CE_GBxAAlCSTNWaaoENi5X7cyXPGr3EDOOniJaO8zzusGqNxZCdZBTLDIuui80n6FM5fkhCZctxQcFTahs1NgNhRUsBqWUvDErvRGpfAubflEHTkizVCFZLsTuM/s320/20160102_132310.jpg" width="180" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
Then I wandered onto the next street. It turns out that they
needed an army too. It’s not that we were the only ones out there. People from all over the area had turned out
to help. I spent part of the morning
working with a great group from Islamic Relief USA. I saw people from churches, charities, other
clubs, and many who came to help without a group. The need is big though. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfUpKxk3FqBicLpBGmWfxdEg1epZGbNTyPktasJSdKDqWJ0WoH5b92gz89wz7kGKyVGoqa3ut87uZBwKXdgNfKF-40-8i_86Wx_ymNaROWg0PfMKr8QMDFkGqpn69GAm4I8ck47Gpag9cy/s1600/20160102_150504+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfUpKxk3FqBicLpBGmWfxdEg1epZGbNTyPktasJSdKDqWJ0WoH5b92gz89wz7kGKyVGoqa3ut87uZBwKXdgNfKF-40-8i_86Wx_ymNaROWg0PfMKr8QMDFkGqpn69GAm4I8ck47Gpag9cy/s320/20160102_150504+%25281%2529.jpg" width="180" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
Most of the relief organizations have stopped taking donations
at this point. They have more stuff than
they have space to hold or people to sort.
At this point, what is needed is financial donations and boots on the
ground. The cost of the recovery is
enormous and there is still much physical labor to be done. <o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVPZsou4whje8J_TjosvSljIa6heLvfoGcprV4qJ33PZkWWvKIDfes4_t62jc1ykTyU8e3goIlz909iF4yKOrM2ydT3-b4MqFDBr12ciJd2I91BzL-WgKfTwGa1krx-_VRA2Iu9828V4vq/s1600/20160102_115233.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVPZsou4whje8J_TjosvSljIa6heLvfoGcprV4qJ33PZkWWvKIDfes4_t62jc1ykTyU8e3goIlz909iF4yKOrM2ydT3-b4MqFDBr12ciJd2I91BzL-WgKfTwGa1krx-_VRA2Iu9828V4vq/s320/20160102_115233.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
If you are willing to help, Renova Community Organization
has an aid station set up at 5029 Locust Grove Rd. in Garland. They have all the tools you might need (like
rakes and shovels), masks, work gloves, waters and phenomenal BBQ. All you need to do is show up and they will
put you to work. <o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9iLu76o5ham5cR22RZ9CQUBOB0qsL55_pz8eHcOV4-DYpFi3ETPnOJ9mCwIFNV_mlue-nSbdLsyOzUk7bLEbuftbhbVGqtDwAg38FFrgAUhYe8AUntil7LpTTEAHNdtLKO9yKDUa2qzUq/s1600/20160102_115237.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9iLu76o5ham5cR22RZ9CQUBOB0qsL55_pz8eHcOV4-DYpFi3ETPnOJ9mCwIFNV_mlue-nSbdLsyOzUk7bLEbuftbhbVGqtDwAg38FFrgAUhYe8AUntil7LpTTEAHNdtLKO9yKDUa2qzUq/s320/20160102_115237.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There is still so much work to be done.</td></tr>
</tbody></table>
<div class="MsoNormal">
I would like to encourage every one of you to find some way
that you can help. Don’t simply say a
prayer and move about your day. Our
neighbors need a cavalry. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicQ-L2duFzC7KvLjklqAtdbMi6X6lhwiKBfFrzvnQPvNOnzsuycp3pyCYXdUvoRdVctYEjPRiO3o-_jWcnJ6WJEhWSNOu7JGo5HYrLc8Y2nNn_CWK8tWjFQTjOJgwFtM3ZUTkqZoro71j8/s1600/20160102_153802+%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicQ-L2duFzC7KvLjklqAtdbMi6X6lhwiKBfFrzvnQPvNOnzsuycp3pyCYXdUvoRdVctYEjPRiO3o-_jWcnJ6WJEhWSNOu7JGo5HYrLc8Y2nNn_CWK8tWjFQTjOJgwFtM3ZUTkqZoro71j8/s320/20160102_153802+%25281%2529.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I am so proud to be married to a guy that works so hard to help others. He really is amazing. </td></tr>
</tbody></table>
<br />Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com1tag:blogger.com,1999:blog-2606143487226169171.post-84401720899193484102015-12-30T15:21:00.000-08:002015-12-30T15:21:10.926-08:00High Heels in Church<div class="MsoNormal">
The day the social worker brought my daughter home, she was
a filthy mess. Her hair was matted and
dirty. She wore a stained, white crop
top with a denim mini skirt. She had on
grungy, white heels that were so high I was surprised she could walk in
them. She looked like a mini hooker but
she was two. I looked at this tiny,
broken child and my heart broke for her. The first thing I did with Alyssa was
get her into a bubble bath and some clean clothes. As a foster parent I had a closet stocked with
various sizes of clothes I might need but I didn’t have any shoes that fit
her. The next day we went shopping for
some age appropriate flats and she never wore heels again until the week before
Christmas. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Many parents think it is cute for little girls to play dress
up in heels or wear the kind of clothes that an older teen might wear. For a
typical child, there’s probably no harm in that. I am personally not a fan of that kind of
wardrobe for a little kid but I would never judge another family’s choice on
the matter. Alyssa has never been
typical though. She understood, even at
that young age, that her value and beauty were intricately linked to her body. She would prance around in a very adult way
looking for reinforcement and would lift her shirt while asking if she was
pretty. <o:p></o:p></div>
<div class="MsoNormal">
Initially I didn’t know how long Alyssa would be staying
with me but I knew that I wanted to spend whatever time I had teaching her that
her value is not defined by her body. I
bought her outfits that were modest but cute enough that people would stop to
comment about how pretty she was. I
purposefully praised her when she made good choices or figured something
out. It was never about shaming the
behaviors or dress from her previous life; it was all about expanding her
definition of beauty to also include intelligence, compassion and perseverance.
Even after the adoption we have continued working to instill those values. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This year, on Small Business Saturday, I bought Alyssa a
beautiful holiday dress from one of my favorite little shops. She had a lead role in the church Christmas
program as the person holding the letter N in Noel. (Her performance was magical by the
way.) I really meant to find her some
new shoes to go along with the dress since all of the ones I bought in August
are too small now but the chaos of life won out. That’s how I found myself frantically trying
to find dress shoes at one of the two stores in our little town on the Saturday
night before the show. Of course, since I was in a bind there was almost nothing
in her size that wasn’t hot pink or just strange. I finally found a pair of shiny black shoes
with a bow on the toes. The problem was
that they were heals. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-NTys8YvvWlu022iUMuBQsQzLNjv-TogYnIun5XHXhaUJ-kZJww1OTFhJmUIG6LORd6kO_I5qyMfgGPb_tJBDtHrqkTbu_zS1o46M8m8BiGssO7f7EQLfDfDKi_zM7Z9pOBsj0ackjxER/s1600/IMG_9870.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-NTys8YvvWlu022iUMuBQsQzLNjv-TogYnIun5XHXhaUJ-kZJww1OTFhJmUIG6LORd6kO_I5qyMfgGPb_tJBDtHrqkTbu_zS1o46M8m8BiGssO7f7EQLfDfDKi_zM7Z9pOBsj0ackjxER/s320/IMG_9870.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The heels.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I stood in the aisle holding those little shoes and flashed back
to the exploited little girl who came home to me four years ago. I tried them
on Alyssa then took them off, disappointed that they fit. When my husband
returned from his wandering, I showed the shoes him, expecting an equally
distraught reaction. I hoped that he
would at least think that she was far too young to be prancing through the
church in half inch heels. Instead he
questioned whether she would fall wearing them.
I explained what the shoes represented but they didn’t mean that to him.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the end, because there was literally no other option, we
went home with the shoes. I planned to
leave early enough to stop someone in the city on our way to church the next
morning for something, anything, else though.
Unfortunately, I am horrible at mornings and we barely got out of the
house in time for the service. In front of God, my parents and the 100 other
people in the congregation, my little girl stumbled to the stage wearing
heels. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLSJoGjG8vRxu1uCAEJnVBDAj5DjHjxGs7YEpMzset-4MSwNBs7pSNBLh0nLTXFBGvpn69NbYYZdQqWItOGvBjhsXkLTObpbQTLXogHJIUn41yyFMjyDki28m0kaR2CinGZIhFXdpgIdkW/s1600/IMG_9832.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLSJoGjG8vRxu1uCAEJnVBDAj5DjHjxGs7YEpMzset-4MSwNBs7pSNBLh0nLTXFBGvpn69NbYYZdQqWItOGvBjhsXkLTObpbQTLXogHJIUn41yyFMjyDki28m0kaR2CinGZIhFXdpgIdkW/s320/IMG_9832.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My stars: Alyssa and Bradley holding the N and backwards E. </td></tr>
</tbody></table>
<div class="MsoNormal">
The performance was fantastic. My kids were off beat but proud. After the service, we had a church potluck
where Alyssa eventually ditched the shoes because she couldn’t run 10 feet in
them without toppling over. In spite of
the dreaded high heels, it was a really good day.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s weird how sometimes the things we think represent
everything evil end up being completely benign. Alyssa was no less innocent
wearing heels than she would have been barefoot. (If I wrote a political blog, I could expand
that analogy to many other topics but we’ll stick to shoes for now.) What happened to her was wrong. The path that brought Alyssa to my door that
day is one I wouldn’t wish on anyone. The shoes, as distasteful as they were,
were only bad because I associated them with the people who put them on her.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiREfVLOE-81qvPcSgnDiIm4SRN1WjWNAXhgpf1CyykPGsgHR7Ze-HrQLWow_FwNgkxpV6R6kydtACKYHXw9Rdjl088Yxv31y8H_OXS6vmG80oULpbJyaiStLiE_s-0uLJYqRQUUAw5GKRH/s1600/IMG_9847.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiREfVLOE-81qvPcSgnDiIm4SRN1WjWNAXhgpf1CyykPGsgHR7Ze-HrQLWow_FwNgkxpV6R6kydtACKYHXw9Rdjl088Yxv31y8H_OXS6vmG80oULpbJyaiStLiE_s-0uLJYqRQUUAw5GKRH/s320/IMG_9847.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That smile.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It was easier when she was little and simply wore whatever I
put her in. I bought frilly dresses and
she twirled. I told her she was
beautiful and she believed me. I think
that this is where the real work starts.
I can’t rely on simple rules, like only flat shoes and one piece
swimsuits, to teach her to be the kind of lady I hope I’m raising. We have to go farther and talk about the
actual qualities that we are working towards and how we know if we have
achieved them. I want her to grow up
believing that she is beautiful in both body and spirit, that she can be proud
of her looks while not being defined by them.
I want her to feel free to express her personality through her style
while understanding that clothes can only say so much. I want her to know that
she was radiant on the stage that Sunday because her smile lit up the
sanctuary, and the heels were just an accessory that I’m learning to live with.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinS7cXIqaBslmrCowW0KkoE6ioRwAN5M1IOSb1F_qFE9liwUxCmknkNzLvvHehXz_bSWfXrp1JGuWkXZox0oIH4KIvA-htasEuwfMOriXidtsh17PHbClPECa8-V4fdDbmaYW7eIdkHcVO/s1600/IMG_9860.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinS7cXIqaBslmrCowW0KkoE6ioRwAN5M1IOSb1F_qFE9liwUxCmknkNzLvvHehXz_bSWfXrp1JGuWkXZox0oIH4KIvA-htasEuwfMOriXidtsh17PHbClPECa8-V4fdDbmaYW7eIdkHcVO/s320/IMG_9860.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our family</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP5sbQ7jJB0FPO4tSr6zINZgpafeiyzur8ukk2iJ1q4-7FngtjpXWaACbeUoiEXinJB0YWyT5snR-QrIvkePTM_4w6_Cw-0MPSM_bmCPs5tgDh4ok2hVTaGCt3cNl2hKo3mrM7C5hb5rKy/s1600/IMG_9840.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP5sbQ7jJB0FPO4tSr6zINZgpafeiyzur8ukk2iJ1q4-7FngtjpXWaACbeUoiEXinJB0YWyT5snR-QrIvkePTM_4w6_Cw-0MPSM_bmCPs5tgDh4ok2hVTaGCt3cNl2hKo3mrM7C5hb5rKy/s320/IMG_9840.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In hindsight, I probably should have asked them to hold still <br />for a picture BEFORE they hit the dessert table.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<br /></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-30301362250194075272015-12-11T10:52:00.000-08:002015-12-11T10:53:55.527-08:00On the Anniversary of her Diagnosis<span style="font-family: "calibri";">Today is the two year anniversary of my life as Humpty
Dumpty.<span style="mso-spacerun: yes;"> </span>On December 11, 2013, I stood in
a WalMart parking lot and answered the phone call that changed everything.<span style="mso-spacerun: yes;"> </span>That was the day that I broke.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">When Alyssa came to us, I knew that she’d had seizures as a
baby.<span style="mso-spacerun: yes;"> </span>The caseworker dropped her off
with a bag of pills that had names I couldn’t pronounce but said that they were
just a precaution.<span style="mso-spacerun: yes;"> </span>She said Alyssa didn’t
have epilepsy.<span style="mso-spacerun: yes;"> </span>A few months later, on
Christmas day, Alyssa had several long seizures in a row but the doctors told
us that it was a fluke caused by the stress of foster care.<span style="mso-spacerun: yes;"> </span>Then, a year later the seizures hit with a
vengeance.<span style="mso-spacerun: yes;"> </span>This time they didn’t say
that it was a fluke or something that she would grow out of. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">For months, Alyssa seized no matter what the doctors did and
she kept losing ground cognitively.<span style="mso-spacerun: yes;">
</span>Eventually, things started to settle down and we would sometimes go a
few weeks between seizures. Her doctors remained worried though.<span style="mso-spacerun: yes;"> </span>We were on our last available medication so
if the seizures got worse again, our options were limited.<span style="mso-spacerun: yes;"> </span>Alyssa’s neurologist referred us to an
epileptologist who advised my husband and I to begin considering surgery.<span style="mso-spacerun: yes;"> </span>They wanted to remove the part of her brain
that the seizures were originating in.<span style="mso-spacerun: yes;">
</span>The doctors said that we needed to have the surgery as soon as possible
because the longer we waited, the more function she could lose and any damage
would be more likely to be permanent. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I went back and forth about the surgery for months. I was
terrified of allowing the doctors to remove a part of her brain but I was just
as scared of saying no.<span style="mso-spacerun: yes;"> </span>Even the
preparations for the surgery was dangerous.<span style="mso-spacerun: yes;">
</span>She would need to spend a week in the hospital and come off of all her
medications.<span style="mso-spacerun: yes;"> </span>The plan was to cause
Alyssa to have as many seizures as possible while they ran tests to determine
the precise part of her brain that was malfunctioning. We already knew how
devastating seizures could be but there was an additional risk.<span style="mso-spacerun: yes;"> </span>There was a chance that when we tried to put
Alyssa back on all of her medication at the end of the testing, they wouldn’t
work.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I finally agreed to the surgery on one condition; I wanted
genetic testing first.<span style="mso-spacerun: yes;"> </span>No one could tell
us why Alyssa was seizing and we had learned that there are some types of
epilepsy that have genetic causes.<span style="mso-spacerun: yes;"> </span>Since
we have very little information on her birth family’s health history, I felt
like we needed to check for a disorder before slicing into her brain.<span style="mso-spacerun: yes;"> </span>The doctors were annoyed, especially when
insurance initially denied the testing.<span style="mso-spacerun: yes;">
</span>I dug my heals in though and eventually they swabbed her mouth and ran
an epilepsy panel, all while telling me not to expect anything.<span style="mso-spacerun: yes;"> </span>While we waited on the results we scheduled
the testing for the last week of December. I wanted her to have one good
Christmas before everything went haywire again. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">All of that led up to that day in the WalMart parking lot. I
loaded my groceries and the little kids into the car and was just about to take
off when my phone rang.<span style="mso-spacerun: yes;"> </span>Our
epileptologist told me that the results were back and they changed
everything.<span style="mso-spacerun: yes;"> </span>She told me that Alyssa had
a genetic disorder called PCDH19 epilepsy.<span style="mso-spacerun: yes;">
</span>Of course I had never heard of that.<span style="mso-spacerun: yes;">
</span>At the time there were only about 200 girls in the world who had been
given the diagnosis.<span style="mso-spacerun: yes;"> </span>She told me that
this new label meant the surgery was no longer an option because if they
removed a piece of her brain, the seizures would just come back in another
area.<span style="mso-spacerun: yes;"> </span>I learned that Alyssa was at a
higher risk for SUDEP and a shorter life expectancy.<span style="mso-spacerun: yes;"> </span>She said that the seizures might never stop
and that her IQ would continue to drop with each cluster until it landed
somewhere between 60 and 80.<span style="mso-spacerun: yes;"> </span>I felt like
I was Humpty Dumpty being pushed off the wall. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I got back in the car and tried not to cry to hard because I
didn’t want to scare the kids but something had broken in my soul.<span style="mso-spacerun: yes;"> </span>I called my husband but couldn’t get through
so I called my mom while I drove. When I finally made it to the house, Curt pulled
into the driveway behind me. <span style="mso-spacerun: yes;"> </span>My husband
works in the oilfield so there have been many times when things were difficult
and he was gone.<span style="mso-spacerun: yes;"> </span>Every time I really
need him though, he is there and that day was no different.<span style="mso-spacerun: yes;"> </span>We fell apart together that afternoon.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">When the tears finally slowed down, I wanted to crawl in bed
and never get out.<span style="mso-spacerun: yes;"> </span>I didn’t think I
could face the world again.<span style="mso-spacerun: yes;"> </span>The IQ
numbers kept rumbling through my mind.<span style="mso-spacerun: yes;">
</span>You see, I have never been one to care much about sports or popularity
or physical perfection.<span style="mso-spacerun: yes;"> </span>My dreams for
Alyssa were that she would be a brilliant doctor or the president, but now she
might not be able to live independently.<span style="mso-spacerun: yes;">
</span>It all seemed so cruel and hopeless.<span style="mso-spacerun: yes;">
</span>I think Curt knew that if I shut myself in the dark that day, it would
have been even harder to go on so he talked me into going to my MMA class.<span style="mso-spacerun: yes;"> </span>I had a deal with the instructor that if I
had a day when all I could do was punch the bag, we would do that.<span style="mso-spacerun: yes;"> </span>I’m sure I looked like a ragged mess when I
walked in and said that hitting was all I had in me.<span style="mso-spacerun: yes;"> </span>He never prodded but I spent the next hour
taking my devastation out on the heavy bag.<span style="mso-spacerun: yes;">
</span>Then I went home and went to bed. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">I hated the sun when it came up the next morning.<span style="mso-spacerun: yes;"> </span>The world seemed so happy and normal but it
wasn’t the same.<span style="mso-spacerun: yes;"> </span>I had written PCDH19
down on a napkin in my car but I wiped my face with it while I was crying so I
had to call the doctor’s office and ask for the name of the disorder again. <span style="mso-spacerun: yes;"> </span>When I hung up the phone, I Googled the random
string of characters that I didn’t understand but already hated and found the
<a href="http://www.pcdh19info.org/" target="_blank">Alliance </a>and the Facebook group that I would come to depend on.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">The next few months were dark. After months of fighting for
her life, my body and heart were already exhausted but the little flicker of
hope I had remaining had been extinguished in the parking lot that day.<span style="mso-spacerun: yes;"> </span>I even grieved the loss of the surgery I had
been so afraid of.<span style="mso-spacerun: yes;"> </span>It was a terrifying
prospect to cut out a part of her brain on the chance that it would give her a
better future but at least there was some hope with that option.<span style="mso-spacerun: yes;"> </span>In January we hit the one year anniversary of
the seizures starting and I hit rock bottom.<span style="mso-spacerun: yes;">
</span>It’s hard to live without hope. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">When Humpty Dumpty fell, he at least had people who
attempted to repair his shell but there are some kinds of broken where the
pieces just won’t go back together.<span style="mso-spacerun: yes;"> </span>Finding
out that your child won’t ever be ok is that kind of broken.<span style="mso-spacerun: yes;"> </span>You can try to patch things up but they won’t
ever be the same again. <span style="mso-spacerun: yes;"> </span>It takes time to
come to grips with that and the process can be dark and lonely. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";">This anniversary, I am keeping myself busy but I’m not
falling back apart. I’m finally learning how to be ok with this life and the
uncertainty we face. It helps that some amazing research is being done all
around the world so our future is probably not as bleak as our initial
prognosis. More than anything though, I think I’m adjusting to life as Humpty
Dumpty.<span style="mso-spacerun: yes;"> </span>I’ve had the time and space to
get made about being pushed off the wall.<span style="mso-spacerun: yes;">
</span>I worked on grieving the broken pieces and accepting that they won’t
ever go back together the way they were before that call.<span style="mso-spacerun: yes;"> </span>I’ve also realized that there is some beauty
in brokenness.<span style="mso-spacerun: yes;"> </span>I am not grateful for this
disorder and I would change it if I could, but sometimes I connect with people
on a different level than I could before.<span style="mso-spacerun: yes;">
</span>Sometimes I appreciate the life and time that we do have in a way that I
didn’t before I knew how fleeting it could be.<span style="mso-spacerun: yes;">
</span>Sometimes I look around and see other people who have just been knocked
off the wall and I appreciate that my own journey has prepared me to help them
on theirs. <o:p></o:p></span></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-31346215689420789742015-11-30T20:45:00.001-08:002015-11-30T20:45:51.979-08:00Adoption & Epilepsy<div class="MsoNormal">
Ask any adoptive parent about their home study and they will
tell you about the invasive questions they were asked. Most of us have stories of the awkwardness of
a complete stranger sitting calmly in our living rooms while demanding
information that would make even the most open person blush. It is the adoption equivalent of prenatal
care. Birth mothers have to put their feet
up in the stirrups for the OB/GYN but we have to open our nightstand drawers
for a social worker. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Looking back, the part of my home
study that stands out the most is not the section with the intimate questions,
it was the discussion about the children we would someday take into our
home. I vividly remember the social
worker asking us if we were interested in taking in children with special
needs. My husband and I had spoken at
length on the topic ahead of time and told her that we were willing to take on
learning disabilities or minor challenges.
I remember saying that I admired the families that fostered and adopted
kids with special needs but that just wasn’t us. I said it wouldn’t fit our lifestyle. It all
feels pretty ironic now. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I was pregnant with my son,
I prayed that he would be healthy and did everything I could to give him the best
shot at a good start. I stayed pretty
healthy, went to my appointments, decorated a nursery and ate animal cookies every
time my developing baby demanded them. Still, I knew that there was always a
chance that something would happen and we could face challenges. Even when you do everything you can to
improve the odds, childbirth really is something of a crapshoot. Adoption is
different though. A professional comes to
your home and writes out exactly what you are looking for in a child. She asks
you about race and age and gender. You get
a choice about disabilities, except when you don’t. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Finding out that your child has a
disability can be devastating for any parent.
We often go through the stages of grief much like you would after a
death but we can cycle back through them with each new limitation, emergency or
worsening prognosis. We have to learn to
live in <a href="http://www.our-kids.org/archives/Holland.html" target="_blank">Holland</a> and give up on dreams that we cherished since we ourselves were
children. Often all of this is done
while in crisis so we do not have the time to sit down and fall apart because we
are fighting desperately for our children’s lives and futures. There will come
a time when we adjust to this new life but the initiation is brutal and leaves
wounds that never really heal. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Looking back I think that our
adoption experience complicated how I processed Alyssa’s diagnosis. No parent wants their child to have disabilities
but we had specifically requested a kid that was “normal.” When I got the call about Alyssa, her case
worker explicitly stated that she did not have epilepsy. We had these grand life plans that didn’t
involve constant trips to doctors and therapies or always having to live near
modern medical facilities. We did
something good by choosing to foster and adopt so it didn’t seem fair that the
child we received was not the one we asked for. I was angry about the
unfairness of it all for a very long time.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I relate to the other parents of
children with special needs on many levels but I don’t bear the guilt of having
been the one to pass on Alyssa’s genetic disorder or the constant questions of
if it was something I did caused her problems.
I relate to adoptive parents too but our story isn’t just about adoption
anymore. I switch back and forth between
groups depending on the support I need at the moment. It is hard to find your tribe when you really
fit somewhere in the middle and it is easy to feel alone when there isn’t a
group with your name on it.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t say all of this to make
anyone feel sorry for us. I am not
asking for pity or pats on the back or patronizing comments about how God only
gives special kids to special people. I
have realized over the past few weeks that there are many other families that
find themselves in our position and I think maybe they struggle like I
have. I’m writing this tonight for the
people who aren’t quite sure what group they belong to. I’m writing to the mother who is raging at
God for rewarding her good deeds with the chance to watch her child die. I’m writing this for the people that lay
awake at night wondering what they did to deserve this horror. I’m writing this for the person who feels
guilty because they are so angry and overwhelmed when that gets mixed up with
the fear and grief. I’m writing this to
the parent that feels alone because I want you to know that I’m here too. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We said exactly what we could
handle and life didn’t listen. We had
great plans for the families we were building but those changed when the special
needs surfaced. It is confusing and hard and not at all fair. I can tell you though that it will eventually
get better. I know you didn’t ask for
these trials but I also believe that you can make it through. Give yourself some grace, accept the messiness
and just keep breathing. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
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Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-30390345068643000832015-11-10T11:45:00.000-08:002015-11-10T11:45:11.168-08:00The Problem with Re-homing
<span style="font-family: Calibri;">A few months ago, Rep. Justin Harris from Arkansas and his
wife made national news when it was revealed that they had re-homed their two
adopted daughters.<span style="mso-spacerun: yes;"> </span>For those who haven’t
been following the story, Harris allegedly abused his political power to push
through an adoption that almost every professional involved believed was a bad
fit.<span style="mso-spacerun: yes;"> </span>After the adoption, the girls’ behavior
grew worse.<span style="mso-spacerun: yes;"> </span>A former babysitter even claims
the Harrises believed their daughters were demon possessed and called in
exorcists from out of state to fix the children. <span style="mso-spacerun: yes;"> </span>Eventually, the couple realized that they were
unable to handle the complex psychological problems that the girls’ had so they
gave them to another couple where at least one of them was sexually
abused.<span style="mso-spacerun: yes;"> </span>The girls have now been adopted
again and are reportedly doing well.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The Harris adoption fiasco has bothered me since the news
first broke.<span style="mso-spacerun: yes;"> </span>I am appalled that this man
thinks himself too good to go through the proper channels and adopt children
that are a healthy match for his family.<span style="mso-spacerun: yes;">
</span>This couple might have been fine adoptive parents to the right
kids.<span style="mso-spacerun: yes;"> </span>Instead they met a birthmother in
a parking lot, claimed religious discrimination when CPS told them that prayer
was not enough to help these girls, then allegedly held up the budget of the
entire agency until the placement was approved. What they failed to understand
is that waiting children do not only need to be adopted; they need to be
adopted by families who are appropriate for them and who are trained to deal
with complex trauma. <span style="mso-spacerun: yes;"> </span>Kids who have been
severely abused or neglected cannot be parented like typical children and they
deserve parents who have put in the time and effort to prepare for that.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The Harrises claim that they reached out for help after the
adoption and were not able to access the services their daughters needed.<span style="mso-spacerun: yes;"> </span>One of the girls had been diagnosed with
reactive attachment disorder, or RAD, and her behaviors were terrifying the
family. Children with RAD have typically experienced so much abuse or neglect
that they are unable to form healthy attachments.<span style="mso-spacerun: yes;"> </span>They can be extremely violent even at very
young ages.<span style="mso-spacerun: yes;"> </span>Often they become homicidal
or suicidal and everyone in the home is at risk of severe harm. <span style="mso-spacerun: yes;"> </span>Stories abound of children with RAD killing
pets, sexually abusing siblings, burning down homes with people inside, or
attempting suicide. <span style="mso-spacerun: yes;"> </span>Unfortunately, the
intense treatments that these kids need are few and far between and when a
parent is able to find a place that specializes in these kinds of issues,
Medicaid* often refuses to cover the cost.<span style="mso-spacerun: yes;">
</span>Instead, children with RAD are bounced between inadequate providers or
sent home where they are a danger to their family and themselves. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Like many parents who are struggling with a child who has
RAD, the Harrises claim that they reached out to CPS because they did not know
what else to do with their children.<span style="mso-spacerun: yes;"> </span>They
say that they were told that if they relinquished their parental rights to their
children, they would be charged with child abandonment.<span style="mso-spacerun: yes;"> </span>The problem is that they were not given any
other options.<span style="mso-spacerun: yes;"> </span>While my personal opinion
of the Harrises is less generous, I truly believe that the majority of adoptive
parents who consider rehoming are not bad people who simply grew tired of the
children they adopted.<span style="mso-spacerun: yes;"> </span>Many of them are
good people who wanted to help kids and build their families but instead find themselves
in desperate situations with nowhere to turn.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I wrote </span><a href="http://www.scarymommy.com/rehoming-my-adopted-daughter-was-never-an-option"><span style="color: #0563c1; font-family: Calibri;">recently</span></a><span style="font-family: Calibri;">
about my own experience with a therapist who assumed that I should “just
re-adopt out” my daughter because things were difficult.<span style="mso-spacerun: yes;"> </span>It was insulting because the suggestion meant
that he did not see my family as one worth preserving.<span style="mso-spacerun: yes;"> </span>I didn’t go in as someone who was scared for
her life or that of her other children.<span style="mso-spacerun: yes;">
</span>I went to him as a grieving mother who was trying to make sense of a
devastating diagnosis. <span style="mso-spacerun: yes;"> </span>He made a
recommendation that he would never have made to a biological parent simply
because he placed a lower value on the relationship I have with my adopted daughter
than the one I have with my biological son.<span style="mso-spacerun: yes;">
</span>That attitude is unacceptable but it is sadly prevalent among the people
that adoptive parents reach out to for support.<span style="mso-spacerun: yes;">
</span>For example, when I interned at an inpatient psychiatric hospital, I saw
countless children and adolescents with very severe mental problems who were
moved to long-term residential treatment centers. <span style="mso-spacerun: yes;"> </span>The only time it was ever suggested that a
child be placed with a new family instead of receiving treatment was when someone
noticed the adoption box was checked in their chart.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The problem with rehoming, as it currently exists, is that
it fails both the children and the adoptive parents.<span style="mso-spacerun: yes;"> </span>Every time a child is placed with a new
family, they suffer a new loss and it becomes harder for them to trust that they
will ever be truly loved by anyone.<span style="mso-spacerun: yes;"> </span>In
addition, many of the kids who find themselves in new homes are later abused or
abandoned again.<span style="mso-spacerun: yes;"> </span>With no government or
agency oversight to make sure that the new homes are safe for these children, the
outcomes can be devastating. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">That the problem of rehoming exist in the magnitude it does
is evidence that there is a problem with the child welfare system.<span style="mso-spacerun: yes;"> </span>When parents go through classes to
foster-adopt, we are promised help after the adoption.<span style="mso-spacerun: yes;"> </span>We are told that we can take in kids from
hard places because we will have access to all of the resources we need to
parent them.<span style="mso-spacerun: yes;"> </span>We are assured that if we
do what we are trained to do, the children will get better.<span style="mso-spacerun: yes;"> </span>Unfortunately those are often empty promises.
<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The problem with rehoming is that it allows CPS, adoption
agencies, and the professionals that we depend on to simply push our children
aside and blame the parents when there is fallout.<span style="mso-spacerun: yes;"> </span>The problem is that there is not an
acceptable alternative for situations where the child cannot safely remain with
their family.<span style="mso-spacerun: yes;"> </span>The problem is that there
are deeply wounded children who have been failed many times by the people who
were supposed to protect them and there is not an easy way to fix that.<span style="mso-spacerun: yes;"> </span>I don’t think that there are simple solutions
to this problem but I do think we have to start a conversation about real
alternatives.<span style="mso-spacerun: yes;"> </span>We have to put down our
torches so that we can see the hurting people who feel like they have no other
options.<span style="mso-spacerun: yes;"> </span>It’s not enough to be angry
about little girls being tossed between homes and given to a rapist, we have to
work to keep it from happening again.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I welcome your thoughts on how we can come together as a
community to help adoptive families who are struggling.<span style="mso-spacerun: yes;"> </span>Let’s continue this conversation on </span><a href="https://www.facebook.com/momwithanasterisk"><span style="color: #0563c1; font-family: Calibri;">Facebook</span></a><span style="font-family: Calibri;"> or in the
comments below.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"></span></o:p> </div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><span style="font-size: x-small;">*In most cases, children who are adopted from foster care
are able to keep Medicaid.<span style="mso-spacerun: yes;"> </span>This helps
people adopt who would not have been able to because of the high cost of
medical care.<span style="mso-spacerun: yes;"> </span></span></span></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-1159257642406876972015-11-07T15:19:00.001-08:002015-11-07T15:20:00.221-08:00Should Everyone Consider Adoption?<div class="MsoNormal">
Someone asked me recently if I thought that everyone who
wants children should consider adoption. I am absolutely an advocate for
adoption but I found myself pausing before I answered. The problem is that sometimes when we promote
adoption and highlight the happy families it can create, we gloss over the
darker side. The truth is that every
tearjerker story about a family being brought together starts with another story
of absolute devastation. Our children
are not simply gifted to us, they are taken or abandoned or orphaned
first. Sometimes the love of a new
family helps to heal the wounds of that loss; sometimes it isn’t enough. </div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we recognize that adoption is so deeply connected to
loss, it changes the conversation. It is
no longer simply about adults who want to be parents and fulfil that dream
through adoption. We also begin to recognize
that adoption is about children who have lost everything. Studies show that even infants who are
adopted at birth, grieve their first mother.
Children who spend time in orphanages, foster placements or abusive
homes lose their self of normalcy, the people that they depended on, and often their
identity. They grow up in a world
focused on survival instead of play and connection. Fortunately, in the majority of cases, those
children can go on to live happy and loving lives when given the right supports
but some struggle to ever really recover.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When someone is considering adoption, it should be with the knowledge
that it is more complicated than parenting a typical, biological child. You
should know that sometimes the wounds are deep and do not heal easily. To make things worse, sometimes the supports
that you were promised for after the adoption never materialize. You should know that your child’s past is not
sealed at adoption like their original birth certificate. Everything that their old life gave them or
made them remains after the judge declares you a forever family. At the same time, you should know that you
will grow to love this child deeper than you ever thought possible. You should know that when you get through to
them you will feel as though you have just won the Olympics. You should know that there will be moments
that you find yourself in awe that God is allowing you to parent this amazing
person. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although the dark side of adoption is not highlighted on
commercials, I think it is critical to understand before you consider adding to
your family. You must take the time to
have some honest conversations about whether your family can handle adoption
and, if so, what type is best for you. There
are important differences between international, domestic, and foster care
adoption. You should also decide what child(ren) would fit best with you. The waiting list for healthy infants is long
but there are thousands of older children, sibling groups or children with a
wide range of disabilities who are legally free and waiting for a family today. If your heart is open to these amazing kids, please
consider opening your home too but if they are a consolation prize for the baby
that you really wanted, please step back in line for the one that you will give
your whole heart to.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, should everyone consider adoption? My answer is no. I do think that everyone should consider how
they can help the orphan. That could mean anything from donating duffle bags for
kids being shuffled between homes to mentoring youth or providing respite care.
Or, maybe you will find your niche in
some of the many great programs working to reduce the need for adoption around the
globe. It could also lead to a
realization that the children you were destined to raise had another family
first. We all have a different roles to
play and I think that we should each consider where we fit best. Adoption can be beautiful but it is not simple
or easy or for everyone. Is it for you?
What are you considering for your family?<o:p></o:p></div>
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<br /></div>
<br />
<div class="MsoNormal" style="text-align: center;">
<i>I know that my thoughts on this are out of line with the typical
Adoption Awareness Month message. I want
to hear your thoughts. Let’s continue
this conversation on <a href="https://www.facebook.com/momwithanasterisk" target="_blank">Facebook</a></i>.<o:p></o:p></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-1461288368712893362015-11-02T18:41:00.000-08:002015-11-04T07:54:59.661-08:00To the New Epilepsy Mom:<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuEQEZg8llu3sGL0nsdPVczRx6n-xidf59dm8GUnOxA47Y-LCAwE18YPz4iGZJIg5r9MSdEu0I0EaeDABBSwgIKiK4PWIEov7bhMgnQ1zk_tHqmXvts2BciyhdWBqVlsNhZCe5M4b12pmS/s1600/letter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuEQEZg8llu3sGL0nsdPVczRx6n-xidf59dm8GUnOxA47Y-LCAwE18YPz4iGZJIg5r9MSdEu0I0EaeDABBSwgIKiK4PWIEov7bhMgnQ1zk_tHqmXvts2BciyhdWBqVlsNhZCe5M4b12pmS/s320/letter.jpg" width="320" /></a></div>
<span style="font-family: "calibri";"></span><br />
<span style="font-family: "calibri";">I recognize
that look in your eyes.<span style="mso-spacerun: yes;"> </span>It’s a mix of
terror, despair, confusion and maybe a little bit of hope that this is all just
a bad dream.<span style="mso-spacerun: yes;"> </span>Maybe you are still in the
hospital waiting helplessly while the doctors try to stop the seizures.<span style="mso-spacerun: yes;"> </span>Maybe you are feeling broken having just
received your child’s diagnosis.<span style="mso-spacerun: yes;"> </span>Maybe
you are ready to curl into a ball and hide because it all feels so overwhelming.<span style="mso-spacerun: yes;"> </span>I’ve been there.<span style="mso-spacerun: yes;"> </span>I’m still there sometimes. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">When my
daughter started seizing, the world turned upside down.<span style="mso-spacerun: yes;"> </span>When we finally received her diagnosis of </span><a href="https://www.pcdh19info.org/"><span style="color: #0563c1; font-family: "calibri";">PCDH-19 Epilepsy</span></a><span style="font-family: "calibri";">, I broke.<span style="mso-spacerun: yes;"> </span>I felt alone and scared and confused.<span style="mso-spacerun: yes;"> </span>I didn’t know what to do or who to turn
to.<span style="mso-spacerun: yes;"> </span>At this point, we seem to have
settled into our new normal so I’m sharing a few of the things I wish someone
had been there to tell me. </span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">1.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "calibri";"><b style="mso-bidi-font-weight: normal;">You are
not alone</b>.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">I know you feel alone. <span style="mso-spacerun: yes;"> </span>I know that it seems like no one understands.<span style="mso-spacerun: yes;"> </span>Many of us who have been on this road for a
while understand the terror and we are ready to walk beside you.<span style="mso-spacerun: yes;"> </span>You can find us through your hospital’s
social workers, online groups or </span><a href="http://www.p2pusa.org/p2pusa/sitepages/p2p-home.aspx"><span style="color: #0563c1; font-family: "calibri";">Parent to Parent</span></a><span style="font-family: "calibri";">.<span style="mso-spacerun: yes;"> </span>We want to be there for you.<span style="mso-spacerun: yes;"> </span>I found a group of parents on Facebook who
have children with my daughter’s disorder and they have been the ones to pull
me through some of the darkest moments.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">2.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "calibri";"><b style="mso-bidi-font-weight: normal;">Build
your team.</b><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">The old adage about needing a village to raise a
child will become especially true.<span style="mso-spacerun: yes;"> </span>There
will be doctors, nurses, therapists, and social workers. (You’ll notice that I
wrote every one of those in the plural.<span style="mso-spacerun: yes;">
</span>That was on purpose.)<span style="mso-spacerun: yes;"> </span>The
relationship with your child’s teachers or babysitters will grow to a whole new
level.<span style="mso-spacerun: yes;"> </span>Take the time to talk with your
team until you have your questions answered.<span style="mso-spacerun: yes;">
</span>Research the professionals you are going to work with because having a
great therapists / doctor / whatever you need can make a world of difference if
your child’s progress.<span style="mso-spacerun: yes;"> </span></span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">3.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "calibri";"><b style="mso-bidi-font-weight: normal;">Ignore
the idiots.</b> <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">People will tell you that they know what it’s like
because their dog had a seizure.<span style="mso-spacerun: yes;"> </span>People
will tell you that garlic or lemons or copper bracelets cured epilepsy for
their father’s cousin’s friend’s co-worker.<span style="mso-spacerun: yes;">
</span>In my experience it is better to roll your eyes than punch them in the
nose.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">You can also expect people to think that your
crisis is over if they see you at WalMart and your child is not currently
having a seizure.<span style="mso-spacerun: yes;"> </span>Realize that most
people just don’t know the facts about epilepsy.<span style="mso-spacerun: yes;"> </span>You can educate them if you choose but don’t
feel guilty if you need to simply walk away.<span style="mso-spacerun: yes;">
</span>It can also help to ask a friend to keep people informed so that the
burden doesn’t fall entirely on your shoulders. <span style="mso-spacerun: yes;"> </span></span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">4.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "calibri";"><b style="mso-bidi-font-weight: normal;">Be who
you are.</b><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">It’s easy to look at those “super moms” who seem to have it
all together.<span style="mso-spacerun: yes;"> </span>They balance all of their
child’s special needs with their hair in place and advocate tirelessly without
messing up their makeup.<span style="mso-spacerun: yes;"> </span>I am not one of
those moms. <span style="mso-spacerun: yes;"> </span>My hair is never in place,
my mascara is usually smudged and I am not always the most diplomatic
person.<span style="mso-spacerun: yes;"> </span>I used to alternate between
feeling guilty for not being them and being angry at them for making me feel
guilty.<span style="mso-spacerun: yes;"> </span>Now, I’ve realized that most of
them aren’t quite as perfect as I thought.</span></div>
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">I also learned that many people cope
with their child’s epilepsy by advocating.<span style="mso-spacerun: yes;">
</span>If that’s you, perfect.<span style="mso-spacerun: yes;"> </span>Write
letters.<span style="mso-spacerun: yes;"> </span>Demand action.<span style="mso-spacerun: yes;"> </span>Go on fund raising walks.<span style="mso-spacerun: yes;"> </span>All of those are great things to pour your
energy / anxiety into.<span style="mso-spacerun: yes;"> </span>If raising
awareness or funding research helps you cope, then go for it.<span style="mso-spacerun: yes;"> </span>If you are the mom that focuses solely on
your own child and getting her or him the best care possible, that’s ok
too.<span style="mso-spacerun: yes;"> </span>If you don’t want to share your
story, you don’t have to.<span style="mso-spacerun: yes;"> </span>Work on
finding a way to battle epilepsy that fits for you and your family.<span style="mso-spacerun: yes;"> </span>The last thing you need to do right now is
try to fit into someone else’s model of what a “good” epilepsy mom looks
like.<span style="mso-spacerun: yes;"> </span>You have enough on your plate
already. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">5.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri";">Understand that your friends may change.</span></b></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">Sometimes the people who you thought would be there
through thick and thin disappear because seizures are scary.<span style="mso-spacerun: yes;"> </span>Sometimes people step up in ways you never
imagined.<span style="mso-spacerun: yes;"> </span>Your life has changed now and
because of that so will many of your friendships.<span style="mso-spacerun: yes;"> </span>Mourn the ones you lose but don’t spend too
much time being bitter.<span style="mso-spacerun: yes;"> </span>You have bigger
battles to fight than that.</span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">6.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "calibri";"><b style="mso-bidi-font-weight: normal;">Keep
going.</b></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">Treating epilepsy is complicated.<span style="mso-spacerun: yes;"> </span>Your child may need to be seen by multiple
specialist and they may not be able to get the seizures under control
immediately.<span style="mso-spacerun: yes;"> </span>Don’t give up hope when the
first medications don’t work or the second or third.<span style="mso-spacerun: yes;"> </span>About 70% of people with epilepsy are able to
control the seizures with medications but it often takes time to find the right
drug or combination of treatments.<span style="mso-spacerun: yes;"> </span>It
can also take time for the doctors to diagnose the exact cause of your child’s
epilepsy which can greatly impact the prognosis and course of treatment.<span style="mso-spacerun: yes;"> </span>Many people never get an explanation but with
time are able to find treatments that help.</span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">7.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri";">Trust Your Gut</span></b></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">Researchers have made incredible advances in the
treatment and diagnosis of epilepsy but this is not an exact science. You may be
asked to weigh terrifying side effects of harsh medications against the unknown
costs of waiting or non-medication interventions like surgery or ketogenic
diets.<span style="mso-spacerun: yes;"> </span>Do your research and ask
questions until they are answered.<span style="mso-spacerun: yes;"> </span>When
you are not in crisis, take the time to figure out what treatment(s) makes the
most sense for your child and family and feel right for you.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">Also understand that epilepsy is more than
seizures.<span style="mso-spacerun: yes;"> </span>It can impact motor, speech,
cognition and behavior.<span style="mso-spacerun: yes;"> </span>If you think
that your child is acting different, don’t be afraid to tell the doctors.<span style="mso-spacerun: yes;"> </span>If you think something might be related,
speak up.<span style="mso-spacerun: yes;"> </span>Through it all, trust your
intuition.<span style="mso-spacerun: yes;"> </span>When something feels off, pay
attention.<span style="mso-spacerun: yes;"> </span>You know your child better
than anyone else.<span style="mso-spacerun: yes;"> </span>That is a knowledge set
that the best specialist on the planet doesn’t have.<span style="mso-spacerun: yes;"> </span>Never doubt its value.</span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">8.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri";">Cry.</span></b></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">Or scream or laugh or punch a wall.<span style="mso-spacerun: yes;"> </span>Epilepsy sucks.<span style="mso-spacerun: yes;"> </span>This monster just invaded your family and is
attacking your child. Fall apart for a little while.<span style="mso-spacerun: yes;"> </span>The world won’t end if you do.<span style="mso-spacerun: yes;"> </span>If it hasn’t happened yet, know that the day
is coming when you break down sobbing at a completely inappropriate time or
your reaction to a small annoyance is entirely out of proportion.<span style="mso-spacerun: yes;"> </span>Finding a way to let some steam off along the
way might prevent you from dissolving into a puddle of tears when the gas
station clerk asks how you are doing. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">9.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri";">Breathe.<span style="mso-spacerun: yes;">
</span></span></b></div>
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">Whatever you need to do to be ok, do it.<span style="mso-spacerun: yes;"> </span>It may feel selfish to leave your child right
now just so that you can get a manicure.<span style="mso-spacerun: yes;">
</span>It’s not.<span style="mso-spacerun: yes;"> </span>Your child needs you to
take a break so that you can come back refreshed enough to be the advocate they
need right now. <span style="mso-spacerun: yes;"> </span>Parenting a child with
special needs is absolutely exhausting.<span style="mso-spacerun: yes;"> </span></span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><b style="mso-bidi-font-weight: normal;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: "calibri";">10.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span></b><!--[endif]--><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri";">Know that you will change.</span></b></div>
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 0pt 0.5in; mso-add-space: auto;">
<span style="font-family: "calibri";">You will never again be the parent, or the person, that you
were before your child started seizing.<span style="mso-spacerun: yes;">
</span>Every jerky movement will trigger something terrifying in your brain
that other parents simply cannot understand.<span style="mso-spacerun: yes;">
</span>Small joys like bubble baths will suddenly look like watery graves.<span style="mso-spacerun: yes;"> </span>There will be good changes too though.<span style="mso-spacerun: yes;"> </span>You will find that you can fight harder than
you ever thought you could. You will figure out what in life really
matters.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I know you
didn’t want this.<span style="mso-spacerun: yes;"> </span>I know that you’re
scared.<span style="mso-spacerun: yes;"> </span>Believe me when I tell you that
the sun will come back out at some point.<span style="mso-spacerun: yes;">
</span>So, give yourself some grace, reach out to the mamas who have gone
before you, hug your baby and just keep swimming.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<br />
<div style="text-align: center;">
<span style="font-family: calibri;">Let's keep talking about this. Please follow me on <a href="https://www.facebook.com/momwithanasterisk" target="_blank">Facebook</a> or comment below. </span></div>
<span style="font-family: calibri;"><br /></span></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com6tag:blogger.com,1999:blog-2606143487226169171.post-73421749665875405162015-10-31T22:10:00.000-07:002015-10-31T22:10:28.059-07:00Halloween with the Birth Family
<span style="font-family: Calibri;">Since my kids were in foster care, I have worked hard to
maintain the bond that they have with their biological siblings.<span style="mso-spacerun: yes;"> </span>That hasn’t always been easy due to busy
schedules, family dynamics, and the fact that I have two kids out of the eight children
(soon to be nine) that their mother has given birth to. Last year, my husband
and I sat down to talk with the goal of creating a tradition for this sometimes complicated group.<span style="mso-spacerun: yes;"> </span>We always have a
visit around the holidays but meeting up on Christmas or Thanksgiving is just
not practical.<span style="mso-spacerun: yes;"> </span>Finally, we realized that
Halloween was the answer.<span style="mso-spacerun: yes;"> </span>It is a kid
friendly holiday and we didn’t have family events that would conflict with a
visit.<o:p></o:p></span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-Ya_ZbQ9ThlxWap5Gp3Ub79BYLcA3KcYRdWuaNWwUJzCcc2FESJVep4wptLJqmzCGW1g-oocRJl1fAIZlZSQMTHqtnLDgkH5paS7y4HvrencYl7jhCUVXB88dCqkeyj5eZZ67LcOHibk9/s1600/IMG_9322.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-Ya_ZbQ9ThlxWap5Gp3Ub79BYLcA3KcYRdWuaNWwUJzCcc2FESJVep4wptLJqmzCGW1g-oocRJl1fAIZlZSQMTHqtnLDgkH5paS7y4HvrencYl7jhCUVXB88dCqkeyj5eZZ67LcOHibk9/s320/IMG_9322.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah was a ninja for the 4th year in a row which makes sense since he actually is a martial arts warrior. Bradley was Batman and Alyssa, like every other 6 year old girl in the country, dressed up as Elsa.</td></tr>
</tbody></table>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This summer we told the siblings again that we wanted them
to join us when we took the kids trick-or-treating.<span style="mso-spacerun: yes;"> </span>They agreed and Alyssa immediately decided
that she would be Elsa and T, her 16 year old sister, was going to be Anna.<span style="mso-spacerun: yes;"> </span>There was no discussion of whether
T actually wanted to dress up or if she wanted to be a character from Alyssa’s
favorite movie.<span style="mso-spacerun: yes;"> </span>Alyssa simply informed
everyone that was what would happen.<span style="mso-spacerun: yes;">
</span>Luckily, T agreed.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Bradley’s goals for Halloween were simple: dress like Batman
and get lots of candy.<span style="mso-spacerun: yes;"> </span>Alyssa has been
planning and looking forward to dressing up with her siblings for months though.<span style="mso-spacerun: yes;"> </span>We spent the afternoon at my parent’s house
getting dressed up and hanging out with my grandparents who are in town from
out of state. There was a small festival in town with candy, games and a pet
costume contest.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5k7kJd5YTbFN4DSvxpyMOYrNm3dX0CBNghwyl1PSDQrtf_Xwe1gj_gY3ei09DX4wnR0EjpFllfPRckyk_Rqz9-BGqrLulgQcDgsxV3UPRzAYvMEmjOZcC2WpexnM_bOOi_p_tUYBl-0AZ/s1600/IMG_9332.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5k7kJd5YTbFN4DSvxpyMOYrNm3dX0CBNghwyl1PSDQrtf_Xwe1gj_gY3ei09DX4wnR0EjpFllfPRckyk_Rqz9-BGqrLulgQcDgsxV3UPRzAYvMEmjOZcC2WpexnM_bOOi_p_tUYBl-0AZ/s320/IMG_9332.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The local Boo Bash had tons to do for the cousins. At one point each grandparent and great grandparent had their own child to guide through the festival.</td></tr>
</tbody></table>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">From there we headed one town over for the best trick-or-treating
in the county.<span style="mso-spacerun: yes;"> </span>Unfortunately, her
brothers weren’t able to make it but Alyssa’s two older sisters came to town to
spend the evening with the kids.<span style="mso-spacerun: yes;"> </span>She was
over the moon when she saw T step out in her Anna costume and held hands with
her sister the entire night.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0y7MC9zarwxjDJwVObctLlry4jlJuqjDEIQGsZ1RPAArYKEjnSkxOmGsDrkgQPi7JwlA6Tx0_ztTxccQG1SqeStPOal51GqEH7jo3yLOrSDEZm0NnZCX3nhcyhSxl3zYaZYx6oHZlNFq1/s1600/IMG_9355.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0y7MC9zarwxjDJwVObctLlry4jlJuqjDEIQGsZ1RPAArYKEjnSkxOmGsDrkgQPi7JwlA6Tx0_ztTxccQG1SqeStPOal51GqEH7jo3yLOrSDEZm0NnZCX3nhcyhSxl3zYaZYx6oHZlNFq1/s320/IMG_9355.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sisters forever.</td></tr>
</tbody></table>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Maintaining relationships with birth families is
complicated.<span style="mso-spacerun: yes;"> </span>(I am planning to write
more about that as we head into November which is adoption awareness month.)
For us, it goes beyond the occasional visit and shared pictures.<span style="mso-spacerun: yes;"> </span>I want my kids to have family traditions with
each of their families. I want them to have memories that are more than awkward
meetups in random fast food restaurants.<span style="mso-spacerun: yes;">
</span>I want Bradley and Alyssa to know that I’m ok with them loving their
other family and with them receiving love from their birth family.<span style="mso-spacerun: yes;"> </span>I want them to remember trick-or-treating
with our family and their sisters.</span></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-65061430731153741892015-06-10T14:24:00.002-07:002015-06-10T14:24:28.111-07:00She Wants to be a Mom<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="line-height: 115%;"> </span><span style="line-height: 115%;">My daughter, Alyssa, graduated
from kindergarten a few days ago. I curled her hair and let her wear Chap Stick
for the grand occasion. I helped her put on the little cap and gown and then I
found a place with my family to watch her walk across the stage to get her
diploma. There were the usual welcoming remarks followed by a slideshow. Each
child had several pictures that her or his family had provided followed by a
snapshot of them holding a chalkboard sign proclaiming what they want to be
when they grow up. There were doctors, veterinarians and bull riders (we are in
small town Texas after all). I expected Alyssa’s to say hair stylist or Elsa.
Instead, it said mom. I heard the room sigh as the audience read that simple
word. I imagine the others in the room thought it was sweet and cute for her to
give that as an answer. I teared up as I stared at the screen though because I
know what that word means to my baby girl.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga3YLIy73eZaU94ow7IhDYm3FDBryP4vQgRKJ6ywMgGWCfFv9-wpNGW3KMaOOlpdjSdgMSgH_5thlTvvDgplIXoxidNgZRpb9DbCR6yH1-ibXUdRWipcsLZ2Ia-bnMOmuJaTzfGRt69b8T/s1600/IMG_20150522_174654.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga3YLIy73eZaU94ow7IhDYm3FDBryP4vQgRKJ6ywMgGWCfFv9-wpNGW3KMaOOlpdjSdgMSgH_5thlTvvDgplIXoxidNgZRpb9DbCR6yH1-ibXUdRWipcsLZ2Ia-bnMOmuJaTzfGRt69b8T/s320/IMG_20150522_174654.jpg" width="320" /></a></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
I was never the little girl who
dreamed of growing up to be a mom. I spent more time riding horses than playing
with Barbies. When I was assigned the home economics doll in high school, I used
it as a football and cracked the battery case. And yet, being a parent has been
a key part of my identity for the past decade. Today, I am one of Alyssa’s two
moms. She has a birth mother whose parental rights were terminated by the state
for abusing and neglecting her children. She also has me. I was her foster
mother for almost two years before my husband and I adopted her. <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
Alyssa was only two and a half
years old when she came to us but she had already lived through more than most
adults. This tiny little child was so full of rage that she would scream for
hours. She didn’t speak but would flip people off if she did not like them. She
hit me, kicked me, and spit in my face. She broke anything she could and
sometimes hurt herself when she was angry. I spent countless hours sitting on
the floor with her in my lap, holding her while she screamed. I also walked
away frustrated many times. There have been moments when I completely rocked it
and helped her work through the grief of being abandoned by her first family. There
have been other times when I completely failed and did not react with the
compassion she needed in that moment. Through the ups and downs, I have stayed
though because I believe that family is forever and real love stays even when
it’s hard.<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnOj3cjV2cLQVw9viLDIAwfvAOzyqjcKuK9CsEyvGXpJ4GSJswyqjHOQGWLDYHivS2eLMlDXpf5RXJ-BcZ1C9N9jY6XZyq6QPIGbLIATBi8qWKR5U2z0FpsYJTlUMiGefe0l9sYG_3RlJw/s1600/IMG_8706.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnOj3cjV2cLQVw9viLDIAwfvAOzyqjcKuK9CsEyvGXpJ4GSJswyqjHOQGWLDYHivS2eLMlDXpf5RXJ-BcZ1C9N9jY6XZyq6QPIGbLIATBi8qWKR5U2z0FpsYJTlUMiGefe0l9sYG_3RlJw/s320/IMG_8706.JPG" width="213" /></a></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
Family and love were foreign
concepts for my daughter when I met her. She had been bounced around between
unhealthy homes and shelters. She had experienced loss and hunger and absolute
fear. She had no reason to suspect when she came here that our home would be
any different. Even after our adoption, Alyssa would ask several times each day
if I was still her mom. She does that less now but that fear of abandonment
still rears its ugly head sometimes when she gets in trouble and she goes back
to being the scared little girl who believes no one really wants her. In those
moments she occasionally asks if I will still be her mom as if I might
disappear while she takes a timeout in the corner. “Always and forever” I tell
her. “No matter what you do, we are family and family is forever.” <o:p></o:p></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
I’m just an ordinary mom. I’m
way too busy and I burn dinner more often than I should. My house is messy and
I couldn’t find a pair of matching socks to save my life but somehow, in all of
that, my little girl found a definition of family different than the one that
she was born into. As her picture flashed across that screen, I sat in
amazement at how far she has come. The little girl who came to me so broken,
now has an idea of what it means to be a part of a family and actually dreams
of having her own someday. <o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVDq8RL8mUKdstvtbABqGsmKGuXTd_FaXPG3DmDEIplDKIUPdiCmZ9icfCaA1n02flGbjWNs5n6GhhIVrW5k9DDphpZdeCsJ39QOcTkfuB5Y3XQPhc-HYXbQ0ZJIIaz37My85noOXVCU3_/s1600/IMG_20150522_174248+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVDq8RL8mUKdstvtbABqGsmKGuXTd_FaXPG3DmDEIplDKIUPdiCmZ9icfCaA1n02flGbjWNs5n6GhhIVrW5k9DDphpZdeCsJ39QOcTkfuB5Y3XQPhc-HYXbQ0ZJIIaz37My85noOXVCU3_/s320/IMG_20150522_174248+%25281%2529.jpg" width="320" /></a></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<br />
<div class="MsoNormal" style="line-height: 115%; margin-bottom: .0001pt; margin-bottom: 0in;">
I don’t know what the future
holds for Alyssa. She still struggles
with her past and her special needs add additional challenges to her
future. I do know that she overcame the
odds and learned to love in spite of the pain.
Alyssa wants to be a mom and I couldn’t be more proud.<o:p></o:p></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com1tag:blogger.com,1999:blog-2606143487226169171.post-86277051881481634002015-05-20T09:32:00.001-07:002015-05-20T09:34:25.368-07:00I'm Not Dancing<div class="MsoNormal">
If you ask adoptive
mothers about things people say that make us roll our eyes, remarks about how
lucky our children are to have us will always make the list. We argue that we are lucky to have our
children and it is not the other way around.
My kids are not lucky to have been so abused and neglected that they
required an entirely new family.
However, I still recognize that Alyssa’s life and medical care would be
much different if she still lived with her birth mother. It is likely that she would not receive many
of the services and treatments that I have advocated for. It is likely that her first family would not
be able to devote the resources needed to have her in an appropriate school or
be able to focus on her health in the way that we are. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Those are
uncomfortable thoughts. Alyssa is a child worthy of every treatment, therapy or
resource that can help unlock her potential.
She deserves that, no matter who her family is, just like every other
child does. The fact that she is now my
daughter does not imbue her with some special status that now qualifies her for
a better outcome, or at least it shouldn’t.
She is valuable because she is valuable because she is valuable. The end. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I believe that all
children are valuable and precious and worthy of the best medical care. I believe that when kids get sick, it is our
responsibility as a community to work towards healing and treatments that can
at least improve their lives whenever possible. When it comes to children,
demographics, family economics and specific diagnosis should not matter. Unfortunately, this week the Texas legislature
showed that they prioritize some patients over others and believe some
conditions are more worthy of treatments.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A bill legalizing medical
marijuana, in an extremely limited form, is on its way to the governor’s
desk. I absolutely believe in
legalization (as I have written about <a href="http://momwithanasterisk.blogspot.com/2015/02/a-child-of-texas.html" target="_blank">here</a>) and I should be celebrating. I am not.
First, there are many holes in the law that passed. (You can read a great article about that
<a href="http://dfw.cbslocal.com/2015/05/18/texas-house-approves-flawed-medical-marijuana-bill-measure-goes-to-gov-abbott/" target="_blank">here</a>.) It is poorly written and does not
allow different ratios of THC, which are often needed to treat patients
effectively. Still it is a first
step. What bothers me more is the
implication that my suffering child is more worthy of treatment than someone
else’s child because of her diagnosis. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This law explicitly
states that only CBD oil is allowable and only for people with intractable
epilepsy. If you don’t know, medical
marijuana has been a game changer in the world of epilepsy. For the 30% of patients of who are not able
to control their seizures through available medical treatments, this plant has
been a godsend. It has provided hope to
families fighting epilepsy that had no hope before and it has effectively
worked when nothing else has. At the same time, the movement towards
legalization has also brought unprecedented awareness to epilepsy and our fight
for a cure.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Medical marijuana has
also helped veterans with PTSD gain control of their symptoms and live normal
lives. In other states it has been used
to treat kids with Crohn’s disease or multiple sclerosis. Although the research is still in its
infancy, due to archaic federal laws, even some people with autism seem to show
improvements when treated with different ratios of CBD and THC. Medical marijuana also works wonders for many
people battling cancer. Yet somehow in
the movement to gain treatment for our own children, we decided that all of those
patients were somehow less worthy of treatment because they carry a different label
than our kids. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Many parents of
kids with epilepsy are passionate about the push for medical marijuana because we
understand the cost of every delay. Our
children are dying while they wait for legalization. We have lost several children to seizures
while they waited for their last hope to be approved by politicians who were
more concerned with their own agendas than in letting us have access to a lifesaving
plant. That is devastating and
unacceptable. It is equally appalling
that we would deny other parents the chance to save their children.<o:p></o:p></div>
<br />
<div class="MsoNormal">
I should be dancing
because we finally have some semblance of legalization. I am not.
Instead I find myself very conflicted.
I am angry that politicians were so busy fighting about another bill
that they did not vote on the comprehensive medical marijuana bill. I am sad that many of the marijuana refugees
will still not be able to come home. I
am frustrated the current version may not be broad enough to create the
infrastructure needed for us to actually have access to the plant we so desperately
need. I am heartbroken that a gain for
Alyssa does not equate to hope for my friends whose children are also facing life-threatening
diagnoses. I am hopeful that when the politicians realize that limited
legalization does not lead to the fall of civilization as we know it, they will
come together and create a more comprehensive set of medical marijuana laws. I am hopeful that this small step leads to
more. I am hopeful, but I am not
dancing. <o:p></o:p></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com1tag:blogger.com,1999:blog-2606143487226169171.post-24347769711590653042015-05-12T09:16:00.000-07:002015-05-12T09:26:14.262-07:00I’m a special needs mom and I need you to hold my arms up.<div class="MsoNormal">
When I was a little
girl, my mom and I would get up early most mornings to read the Bible
together. I always loved the stories in
the Old Testament of battles and heroes and romance. I pictured myself as Ester speaking for her
people, Deborah leading the armies into battle or Rahab saving the spies. In my daydreams I was the Biblical version of
Wonder Woman, stepping up and saving the day when the men failed to get the job
done. These days I’m too tired to play
warrior princess. Since Alyssa got sick,
there is another Old Testament story that has resonated with me though. <o:p></o:p></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgasBS91YQZ_3m5_R2hKrpPTzbziSl3g-xptRpgzpru8tbpRCAUD4_0W91sYLZSqFqPHhLlp7e2Ip3x1S7yhZ1s6IIBfiAmNaLDWOA7afgeMHtVwceTdnCN2LWOygk4Khuh5q1jPQmpXvIJ/s1600/11081450_10153225830233606_4114321097716118931_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgasBS91YQZ_3m5_R2hKrpPTzbziSl3g-xptRpgzpru8tbpRCAUD4_0W91sYLZSqFqPHhLlp7e2Ip3x1S7yhZ1s6IIBfiAmNaLDWOA7afgeMHtVwceTdnCN2LWOygk4Khuh5q1jPQmpXvIJ/s320/11081450_10153225830233606_4114321097716118931_n.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alyssa is 6 and has PCDH19 Epilepsy</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In <a href="http://www.blueletterbible.org/Bible.cfm?b=Exo&c=17&t=NLT#s=67008" target="_blank">Exodus 17</a>, we
read a story about a battle that the Israelites fought with Amalek. In this particular battle the Israelites
prevailed so long as Moses held up his hands but he grew tired as the battle
raged. As his weary arms started to
sink, the enemy grew stronger. Seeing
this, Aaron and Hur found a rock for him to sit on. Then they did something that changed the course
of the battle. They stood beside Moses
and they held his arms up.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Parenting in
general is hard work but when a child has special needs it can start to feel
like an impossible task. There are so
many appointments and emergencies and daily trials that it is enough to make
your head spin. Ironically, as the world
implodes and we need help the most, many special needs parents find their
support systems dwindling. Some people
choose to abandon us because our new lives don’t fit their sense of
perfect. Some shrink away in fear that our
tragedy might wear off on them. I
honestly think though that most stand back because they don’t know what to
do. In the face of what seem like
insurmountable obstacles, physical challenges and emotional devastation, they simply
don’t believe that they have anything to offer.
That could not be farther from the truth.<o:p></o:p></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxOU84Wv7DoIKfIBWFqZs-YHNQzZch6myv-rFKImD4-S8grSaF3PGSV0NZhEPRjfwVFfHEZVXHzBQOlZnNpU-msLaaGkhDgjhewuzcbl3boh3GcdqkRCD9v5FMaBauecGew1bopOyvGmSu/s1600/2013-03-06+14.16.59.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxOU84Wv7DoIKfIBWFqZs-YHNQzZch6myv-rFKImD4-S8grSaF3PGSV0NZhEPRjfwVFfHEZVXHzBQOlZnNpU-msLaaGkhDgjhewuzcbl3boh3GcdqkRCD9v5FMaBauecGew1bopOyvGmSu/s320/2013-03-06+14.16.59.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alyssa hanging out in the hospital in March 2013</td></tr>
</tbody></table>
As I reflect back
over the past two years, I remember many times when I felt like I was Moses,
alone on a mountain, growing weary of the fight. There were moments though, when people came
beside me and helped me bear the load. In
small acts of kindness, friends and strangers came along and held our arms
up.<br />
<br />
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was the small town pharmacist who saw us adding yet
another medication and took the time to ask if I’m ok.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was my MMA instructor doing an entire class of just
punching the bag because I was too raw for anything more. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was the time at work when I broke down and every woman in my
office stopped what she was doing to hold me while I sobbed. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was random text messages from people saying that they were
praying for me.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was my mom sitting with Alyssa so that I could sleep for a
few hours after being awake at the hospital for days.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was our brand new babysitter being willing to keep Alyssa
even on bad days so I didn’t have to quit school. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was the other mothers in a Facebook group who understood
the true intensity behind a simple post of “I hate epilepsy” and offered their virtual
support from around the globe.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was the friend who let me take off the mommy hat for a
little while and talk about school or clients or some other gossip that helped
to balance out my brain.<o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was the people who gave my boys grace because they
understood how hard it is to watch your sister fall apart. <o:p></o:p></div>
<div class="MsoNormal" style="margin-bottom: 8.0pt; margin-left: .5in; margin-right: .5in; margin-top: 0in;">
It was the teacher’s aide who gently held Alyssa as she crossed
the stage so she could still receive her pre-k awards last year after seizures left
her disoriented and unstable. <o:p></o:p></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVSK5QQ3QSW939QaA2bdjMa7V1L9Qap4ylW1pHqtZclDaur_TUbsJS4svK58FG1LDKGcBlvbVBfhjzBsi5rV4BfhvD5DMaKKnofIQG16TBwKSIH5G-NTRiRyj8pZfNXy4x3jTp0VNht_I6/s1600/10350402_10152950318153606_9104182901943472539_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVSK5QQ3QSW939QaA2bdjMa7V1L9Qap4ylW1pHqtZclDaur_TUbsJS4svK58FG1LDKGcBlvbVBfhjzBsi5rV4BfhvD5DMaKKnofIQG16TBwKSIH5G-NTRiRyj8pZfNXy4x3jTp0VNht_I6/s320/10350402_10152950318153606_9104182901943472539_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas 2014</td></tr>
</tbody></table>
<div class="MsoNormal">
What I want you to
notice is that few of the things I have listed are world changing actions but they
were slivers of light in an otherwise dark time. They cost their givers very little but meant
the world to me. There was no special
skill or expertise required, only the willingness to stay when our life was
anything but pretty and we were too depleted to give anything in return.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The truth is that
you usually don’t have to do anything extravagant to support the special needs
parents in your world. I don’t need you
to fight my battle. I don’t need you to
have all the answers or the perfect plan to win the war. I just need you to stand beside me sometimes and
hold my arms up.<o:p></o:p></div>
<br />
<div class="MsoNormal">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglW8j5icPU9wv8k6nCM_Q7lt6KpZpyRKSxeN1V3LLjfWi_RV0CaRLxPs-1xYqSqrWuUwUtyDrsH-SIe_ou2Zg6T5BsnCJnAugr-BKRHJzv6Cdtg602SXZ5zMI9SpY2x42DQvSy-qEwb2s8/s1600/10649030_10152715294753606_2879344520557895302_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglW8j5icPU9wv8k6nCM_Q7lt6KpZpyRKSxeN1V3LLjfWi_RV0CaRLxPs-1xYqSqrWuUwUtyDrsH-SIe_ou2Zg6T5BsnCJnAugr-BKRHJzv6Cdtg602SXZ5zMI9SpY2x42DQvSy-qEwb2s8/s320/10649030_10152715294753606_2879344520557895302_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My partner in crime.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com2tag:blogger.com,1999:blog-2606143487226169171.post-43729055195111020182015-04-14T19:18:00.000-07:002015-04-14T19:25:20.579-07:00Cautious Optimism<div class="MsoNormal">
This morning Hubby and I got up at the crack of dawn and
braved rush hour traffic for an appointment with Alyssa’s epileptologist. (An epileptologist is a neurologist with 2 additional
years of specialized training who only treats epilepsy.) We hadn't seen her since December because
Alyssa is fairly stable at the moment. In
fact, in May we will have made it one year without a tonic-clonic seizure (what
used to be known as grand mal seizures.) <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw8wPBHUc0_-g87fCzuiDGmOepq3aGXdg3TucG8jb_4pilFanb9wiu4O1UycJUYFZko5YmYiszSQ2y0sRzD2SYJuUZotna7d2aL91vZyVGCwJ7TD38G52p9kXEZtayFV-cFlRFbrKPqFI1/s1600/20150414_092415.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw8wPBHUc0_-g87fCzuiDGmOepq3aGXdg3TucG8jb_4pilFanb9wiu4O1UycJUYFZko5YmYiszSQ2y0sRzD2SYJuUZotna7d2aL91vZyVGCwJ7TD38G52p9kXEZtayFV-cFlRFbrKPqFI1/s1600/20150414_092415.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy, Alyssa & Super Bradley checking out the games at the children's hospital.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A year without seizures is a huge milestone in the world of
epilepsy. Ironically, it is also terrifying.
If Alyssa maintains her streak over the summer, then in the fall we will start
to slowly wean her off of at least one of her medications. I have a love / hate
relationship with those medications. On
the one hand she takes large doses of mind altering drugs every day with a
whole slew of side effects and an undetermined impact on her development. On
the other hand, those drugs are keeping her alive.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCcftvtVS38I9LoJk3j7LShfXAoY4VVUcWFh37YUmw5zOL0cM0ipMvTvcAeiWNyXb7fmyczcqd4wtsFBkSaS3ISqbmevTZJ4j5KB8pOdq3vh8O4pqT3lHST826RlO3bv31MU0wkGOllk8D/s1600/IMG_20150414_093336.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCcftvtVS38I9LoJk3j7LShfXAoY4VVUcWFh37YUmw5zOL0cM0ipMvTvcAeiWNyXb7fmyczcqd4wtsFBkSaS3ISqbmevTZJ4j5KB8pOdq3vh8O4pqT3lHST826RlO3bv31MU0wkGOllk8D/s1600/IMG_20150414_093336.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pink band-aids and suckers make everything better.</td></tr>
</tbody></table>
<div class="MsoNormal">
<br />
<div class="MsoNormal">
The other fly in the ointment is that the lack of seizures is allowing us to see the behavioral and cognitive challenges that Alyssa faces. She is a complicated kid in that regard. It is hard to tell what is the medications, the disorder, damage from seizures or a result from the abuse she suffered before coming to us. What is clear is that we have a long road ahead of us.<o:p></o:p></div>
<br />
<div class="MsoNormal">
Tonight, I am cautiously optimistic. I am choosing to enjoy this space between clusters, regardless of how long it may last. I am choosing to be grateful for the amazing team of professionals that we have built even as we amass more specialists. I don’t know what tomorrow holds, but I am looking forward to hitting the one year mark, and whatever comes after that.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZtoOEbDx8gTkT57DIy2ZuhxI88GKyn2GUORPHZwZm81lUvYJTevyYJRSqeqiCc4N95dfxiUt5Oc9oVJfjzvRbTObQim_Ukiwwk3W4JYvQSYOrWQkOmEXHL1HZC7KC7IGd41gSITepwGsc/s1600/IMG_8346.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZtoOEbDx8gTkT57DIy2ZuhxI88GKyn2GUORPHZwZm81lUvYJTevyYJRSqeqiCc4N95dfxiUt5Oc9oVJfjzvRbTObQim_Ukiwwk3W4JYvQSYOrWQkOmEXHL1HZC7KC7IGd41gSITepwGsc/s1600/IMG_8346.JPG" height="320" width="213" /></a></div>
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</div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-14500734291160899732015-03-15T21:31:00.002-07:002015-03-15T21:33:27.254-07:00Spring Break ProjectThe kids have been on spring break this week and we have had a great, relaxing time hanging out at the house as a family. After all of the cold craziness, the weather turned out to be perfect so we spent the majority of our waking hours outside. We all did little things around the place but Noah had his own project and I am so very proud of him.<br />
<div>
At the beginning of the week, we decided to give Noah our old chicken coop. A few years ago, a stray dog ate all my chickens and I never replaced them. They were mostly pet chickens (in fact they only laid one egg in the 7 months I had them) and I was afraid of getting attached to new birds and then having them get attacked too. I fully recognize my relationship to chickens is not normal but they were sweet little guys and I was bummed. Back to spring break... this is what we gifted Noah.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0DgG9pxwJ2z0qc8RqYU5xsqNW-T1A6dY_HeiyMQ0z6w5sUItGp3QUWYds-ZKlyoR6VQhOwXtLw_L7WlR5MpJl-qO3N3p8lUh6FmBnuj-PQ0Llx-JYIj1_bSNHfBCYGQr9GN_hg0qPq2Ii/s1600/IMG_8227.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0DgG9pxwJ2z0qc8RqYU5xsqNW-T1A6dY_HeiyMQ0z6w5sUItGp3QUWYds-ZKlyoR6VQhOwXtLw_L7WlR5MpJl-qO3N3p8lUh6FmBnuj-PQ0Llx-JYIj1_bSNHfBCYGQr9GN_hg0qPq2Ii/s1600/IMG_8227.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That's his spy pose.</td></tr>
</tbody></table>
He really wants to be a spy and obviously if you want to be a spy you have to have a clubhouse. It had gotten into pretty bad shape though. The roof was falling off and we were using it to store some hoses for our insulation machine so we all worked together and cleaned it out. The hubby also fixed the roof but it was all Noah from there.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWJgPrgY2hklDQ0A6FlzMl37IVL9FMtKgbKRiHvLjH8Zz7iYI072e7yzK0MClye8IfUcJbIOL28xIeNfsO7_X5FEIgN-oSBEev9CFH9E9n9Boj5v5M9VSnkMmp_trjW-6sE7z7Qo7idQEA/s1600/IMG_8248.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWJgPrgY2hklDQ0A6FlzMl37IVL9FMtKgbKRiHvLjH8Zz7iYI072e7yzK0MClye8IfUcJbIOL28xIeNfsO7_X5FEIgN-oSBEev9CFH9E9n9Boj5v5M9VSnkMmp_trjW-6sE7z7Qo7idQEA/s1600/IMG_8248.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was quite the diamond in the rough.</td></tr>
</tbody></table>
<div style="text-align: center;">
All week long Noah worked. He did odd jobs around the house in the mornings to earn money for spray paint and spent his afternoons hours getting it perfect.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjstK80Ke_pM0Y3UbXMz9B8bf4Rk-Zk1qNHd7fnBV6JNwi_DRmy9i0AKBh5VYRJAtl_Z6HQ2ebim8j0aQyj8FJ4t_5KoWP9yULijUzbZastQ6Aa6FqJ-EbBlhg2sKuafrpCrIZXiFPY2y1C/s1600/P3130023.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjstK80Ke_pM0Y3UbXMz9B8bf4Rk-Zk1qNHd7fnBV6JNwi_DRmy9i0AKBh5VYRJAtl_Z6HQ2ebim8j0aQyj8FJ4t_5KoWP9yULijUzbZastQ6Aa6FqJ-EbBlhg2sKuafrpCrIZXiFPY2y1C/s1600/P3130023.JPG" height="240" width="320" /></a></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo1iNmVMUrNP0YygEPMR9hvvtBf5juKoxxeMQRtMtZBU-dAL_E01k8_CKH2canh96ESK5r-bkKFGUGbzTpx3LvlBfqBLkodceA5l8b7iw4jkeMN4hDP5W8RmYMKZZv00lxpGdlQa16r4OS/s1600/P3110017.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo1iNmVMUrNP0YygEPMR9hvvtBf5juKoxxeMQRtMtZBU-dAL_E01k8_CKH2canh96ESK5r-bkKFGUGbzTpx3LvlBfqBLkodceA5l8b7iw4jkeMN4hDP5W8RmYMKZZv00lxpGdlQa16r4OS/s1600/P3110017.JPG" height="240" width="320" /></a></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: left;">
It was a messy process. Fortunately we now have (almost) all of the paint out of his hair.</div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbNXG5uRLzFgOZPTcl2mygEuPeYYhk1MTN6mOm_9xqRZq8y94mMc1Qp_rzx5FF0iDx1btZ_akyFTFmcFcRvb5cx6vOTUxmiCLkFFlHkrTV2WI3HCAT5OUTmlb8xfPzddhCY8o_mwrhfg_i/s1600/IMG_20150314_081006.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbNXG5uRLzFgOZPTcl2mygEuPeYYhk1MTN6mOm_9xqRZq8y94mMc1Qp_rzx5FF0iDx1btZ_akyFTFmcFcRvb5cx6vOTUxmiCLkFFlHkrTV2WI3HCAT5OUTmlb8xfPzddhCY8o_mwrhfg_i/s1600/IMG_20150314_081006.jpg" height="320" width="320" /></a></div>
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<div class="" style="clear: both; text-align: left;">
On Saturday, he put the final touches on his new clubhouse. He is so proud of his creation. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSB3cQz40ZaYfrumbZ2Iwl4nkt_9-5x1jA3RKGydBZR22wZuyldHeyDQHNSlp68DU02FeALARtsovOR-gZ02iu66dGELOmtFux7KgCs7hpd3BYChXp7kdkZ8QQeuL3cYRxjngcULDwn3SR/s1600/20150314_114905.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSB3cQz40ZaYfrumbZ2Iwl4nkt_9-5x1jA3RKGydBZR22wZuyldHeyDQHNSlp68DU02FeALARtsovOR-gZ02iu66dGELOmtFux7KgCs7hpd3BYChXp7kdkZ8QQeuL3cYRxjngcULDwn3SR/s1600/20150314_114905.jpg" height="320" width="180" /></a></div>
<br />
<br />
Presenting Noah's first "flip" and the international headquarters of MAPSER. <br />
<br /></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-68380905945292152822015-02-14T15:02:00.001-08:002015-02-14T15:11:01.425-08:00A Valentine's Apology (sort of)<p dir="ltr">I feel like my children deserve an apology for the fact their Valentine's parties coincided with grad school. I stayed up late in Thursday night to randomly place generic stickers all over a pre-colored box. I would like to post a picture but I'm afraid that my pinterest account might get deactivated for the absolute lack of creativity. Ok. Here it is. Don't judge.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBZfHpIC4xQjfHErsvLCd0W1Jzh5cSJ0H_MnbI8MGFpK2D8l0zsZ2FTYj3A-Geo8SdfUv2bOpejbm-oGJ6lSAkTxpcjqIOFOO-Bkmy7Dp4Dg24yKtFxYnjsYL3n-IUUQRY2i_2hpIZlN7V/s1600/IMG_20150213_234850.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBZfHpIC4xQjfHErsvLCd0W1Jzh5cSJ0H_MnbI8MGFpK2D8l0zsZ2FTYj3A-Geo8SdfUv2bOpejbm-oGJ6lSAkTxpcjqIOFOO-Bkmy7Dp4Dg24yKtFxYnjsYL3n-IUUQRY2i_2hpIZlN7V/s640/IMG_20150213_234850.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"><p dir="ltr" style="font-family: sans-serif; text-align: start;">At this point, half of you are thinking that at least I didn't send her to class empty-handed while the other half wonder why I haven't had my mommy-card revoked. Personally, I think she's lucky I didn't send her to school with last year's Easter basket. (It is pink and sparkly and I was really tired.)</p><p dir="ltr" style="font-family: sans-serif; text-align: start;">The guilt really comes in though when I look at previous creations. For Noah's first Valentine's Day school party he got a space ship. The next year he had a Captain America shield. That was BS (Before gradSchool). I had time to sleep back then. I also had 1/3 of the little people in my house as a do now. They were simple times. I could be creative. I could go to the parties. I could paint with him. I could sleep.</p></div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-EPvIHedeTtKERWf5AH4OgcNPWt-pFfA8_WlQauPnbQOOA-V83duzaIjaRLzjb63J1RQHU2jNXwcTnkdfSJvwQetqX0TW3zEb6oBzP2ifiYJbj6lPG0gUNSt77VVIuXyHQLF2gj-mpNAk/s1600/Screenshot_2015-02-14-08-44-07.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-EPvIHedeTtKERWf5AH4OgcNPWt-pFfA8_WlQauPnbQOOA-V83duzaIjaRLzjb63J1RQHU2jNXwcTnkdfSJvwQetqX0TW3zEb6oBzP2ifiYJbj6lPG0gUNSt77VVIuXyHQLF2gj-mpNAk/s640/Screenshot_2015-02-14-08-44-07.png"> </a> </div><div class="separator" style="clear: both; text-align: center;"><br></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: sans-serif; text-align: start;">My rational husband is quick to point out that I don't remember any of my Valentine's boxes and that's not why I am crazy. Hopefully next year, when things are calmer, I can go all out and make a cereal box monster or paper towel roll castle. If not, I'm seriously considering just downloading pics of some really extravagant boxes and photo shopping them next my kids faces. Then when they are 34 I will sob hysterically that the don't remember the painstaking effort I put into making every holiday pinterest perfect for my little angels.</span><br></div>Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-10606523641127158742015-02-09T21:40:00.000-08:002015-02-09T22:06:19.414-08:00A Child of Texas<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">I remember the day I met
Alyssa.<span style="mso-spacerun: yes;"> </span>I was her younger brother’s
foster mother so when the family member she was with could no longer keep her
safe, CPS called me first.<span style="mso-spacerun: yes;"> My husband and I had signed up to foster with the hope of adopting at some point but we had been clear that we did not feel up to taking on a special needs kid.<span style="mso-spacerun: yes;"> </span></span>When the caseworker
explained the situation, she said that Alyssa had seizures as a baby but had
outgrown them.<span style="mso-spacerun: yes;"> </span>She was still on some
medication as a precaution but I was assured that she did NOT have epilepsy.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;">
</span>Sometime I wonder what my answer would have been if anyone had known the
truth about her little brain back then but regardless, Alyssa joined our family
that night.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipg4AkMWbTBVaQbO3duQiz4dg5iq4KHdmw8gK7EWPzDY2iGpxQgclUyLX5_GvO-7m7UKMurJO0pcQ359Akqe7wPuXWzRIz2DHDtXOD4UgZUBSWyDecdNZ3H0a2uTuEDcknK7-EtShk1ZKI/s1600/IMG_5428.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipg4AkMWbTBVaQbO3duQiz4dg5iq4KHdmw8gK7EWPzDY2iGpxQgclUyLX5_GvO-7m7UKMurJO0pcQ359Akqe7wPuXWzRIz2DHDtXOD4UgZUBSWyDecdNZ3H0a2uTuEDcknK7-EtShk1ZKI/s1600/IMG_5428.JPG" height="320" width="213" /></a></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">Alyssa was two and half years old
when she came to us.<span style="mso-spacerun: yes;"> </span>She was mostly non-verbal,
had some developmental delays and would scream for hours at a time.<span style="mso-spacerun: yes;"> </span>It was tough road and there were times I
thought I could not handle one more day.<span style="mso-spacerun: yes;">
</span>Eventually the mama bear in me won out and I fell in love with the
broken little girl who needed someone to love her through the pain and defend her
in a system that did not always seem to have best interest at heart.<span style="mso-spacerun: yes;"> </span>In November of 2012, 14 months after she came
to me, the court terminated parental rights so Alyssa and her little brother,
Bradley, were in route to becoming our forever children.<span style="mso-spacerun: yes;"> </span>Christmas was amazing that year.<span style="mso-spacerun: yes;"> </span>It seemed like everything was coming together
for our little family.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">On January 10<sup><span style="font-size: x-small;">th</span></sup>, 2013
our perfect world collapsed.<span style="mso-spacerun: yes;"> </span>Alyssa had
a seizure on the way to school that morning.<span style="mso-spacerun: yes;">
</span>She had only had one cluster of seizures in all the time she had been in
our home.<span style="mso-spacerun: yes;"> </span>That was a few months after we
got her and her doctors said it was an anomaly, a result of the stress of being
a foster child. <span style="mso-spacerun: yes;"> </span>This time it wasn’t
stress.<span style="mso-spacerun: yes;"> </span>I laid her down beside me and
she seized again and again and again.<span style="mso-spacerun: yes;"> </span>We
went to the emergency room, then took an ambulance to Cook’s Children’s
Hospital.<span style="mso-spacerun: yes;"> </span>Over the next three months we
were admitted to the hospital six different times, went through multiple
medications with horrid side effects and were driving several hours each week
to see various specialists who might have an answer.<span style="mso-spacerun: yes;"> </span>In spite of everything, Alyssa regressed to
the point that she was back in pull-ups, could barely speak or walk some days
and did not always know who we were.<span style="mso-spacerun: yes;">
</span>Through therapy, she had worked past most of the delays she had when she
came to us and was a fairly typical four year old but now there were days when
she would simply lay in bed and stare with a vacant look in her eyes.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkOMyknmgMyMZk8BFP9s448zMfREtQ-TwEtj8dQxwjaV_X97nPlN10FzwVdK3WeTm2wEfDf_sY20XLCzodJikq63zhijKWCAZqv2MC8RRkyiHd3zDoxUMV-kvlU1pg25e3gZdiq7MZAzW1/s1600/2013-02-20+09.27.50.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkOMyknmgMyMZk8BFP9s448zMfREtQ-TwEtj8dQxwjaV_X97nPlN10FzwVdK3WeTm2wEfDf_sY20XLCzodJikq63zhijKWCAZqv2MC8RRkyiHd3zDoxUMV-kvlU1pg25e3gZdiq7MZAzW1/s1600/2013-02-20+09.27.50.jpg" height="320" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: xx-small;">An allergic reaction to an anti-seizure drug caused Alyssa to swell and spend several days in the hospital.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">Our adoption had not been finalized
yet, so Alyssa was still a foster child at that point.<span style="mso-spacerun: yes;"> </span>We were lucky to have some amazing CASA
workers, one of whom was a retired nurse who joined me at an appointment with
Alyssa’s neurologist so that she could report to CPS exactly what the prognosis
was.<span style="mso-spacerun: yes;"> </span>The doctor could not explain the
sudden onslaught of seizures and had little hope that Alyssa would ever be back
to normal. <span style="mso-spacerun: yes;"> </span>Shortly after, I was asked if
we still wanted to adopt Alyssa.<span style="mso-spacerun: yes;"> </span>Her
caseworker said that she knew this was not what we signed up for.<span style="mso-spacerun: yes;"> </span>We never planned to have a special needs
child and they understood if we wanted to back out.<span style="mso-spacerun: yes;"> </span>On May 31<sup><span style="font-size: x-small;">st</span></sup>, 2013 my husband and I
adopted Alyssa and Bradley.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0orpPoLuD6AYWZp0F4yI5n5345oqNVADlloeFhmftB6sQBxKwvsiGeYAMU52qAtMqaJaeeo5LBqq2OoH7zBpEZraEAtAiioWD-t0yT1cIqVzvg224dTqkJxoPNq_h78HxyA-ofq1Cvexd/s1600/404_10151656964763606_1529343994_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0orpPoLuD6AYWZp0F4yI5n5345oqNVADlloeFhmftB6sQBxKwvsiGeYAMU52qAtMqaJaeeo5LBqq2OoH7zBpEZraEAtAiioWD-t0yT1cIqVzvg224dTqkJxoPNq_h78HxyA-ofq1Cvexd/s1600/404_10151656964763606_1529343994_n.jpg" height="320" width="213" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: xx-small;">Adoption Day!</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">Eventually, we found a cocktail of
medications that is currently controlling the seizures but not without some
serious cognitive and behavioral side effects.<span style="mso-spacerun: yes;">
</span>Alyssa is in speech and occupational therapy and has gained a lot of
ground but regresses any time she has breakthrough seizures. One year ago, genetic
tests revealed that she has <a href="http://www.pcdh19info.org/" target="_blank">PCDH-19 Epilepsy</a>.<span style="mso-spacerun: yes;">
</span>It is a rare and severe type of epilepsy with devastating
complications.<span style="mso-spacerun: yes;"> </span>Up to 70% of the girls
with PCDH-19 develop cognitive delays.<span style="mso-spacerun: yes;"> </span>Mental
illness and behavioral problems are common.<span style="mso-spacerun: yes;">
</span>Alyssa is also at an increased risk of SUDEP (<span class="st1"><span lang="EN" style="mso-ansi-language: EN; mso-bidi-font-family: Arial;">Sudden
Unexpected Death in Epilepsy).<span style="mso-spacerun: yes;"> </span></span></span>With
this diagnosis, we know that if we can’t control the seizures, she will
continue to decline.<span style="mso-spacerun: yes;"> </span>As it stands, we
have had to consider leaving our home and family to join the exodus of families
who have forsaken everything in hope of a cure in Colorado. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">I know that there are people all
over the world who are being forced from their homes and in the grand scheme of
things, our situation is mild.<span style="mso-spacerun: yes;"> </span>Honestly,
if you are going to be forced to move somewhere, Colorado is about as good as
you could hope for.<span style="mso-spacerun: yes;"> </span>The mountains are
beautiful and the people are great there, but Texas is our home.<span style="mso-spacerun: yes;"> </span>Packing up would mean starting over.<span style="mso-spacerun: yes;"> </span>My husband is a driller in the natural gas
industry which is not prominent in that part of the country.<span style="mso-spacerun: yes;"> </span>Leaving would mean abandoning our friends and
our family and our church.<span style="mso-spacerun: yes;"> </span>Worst of all,
it means not ever coming home.<span style="mso-spacerun: yes;"> </span>Crossing
the state line to spend Christmas with my parents would mean risking arrest and
even losing custody of our children for possessing the medicine that my
daughter needs to stay alive.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJXl5hnO6uUjUGwhiuviN992ydRQmef1rsV0PZ4RgNWzoQjyHErDAhcDzYAtdW_44CBoG25P1NvL7PNsYbWvm7GvGQ4uQnwzmp1CPR02le9Z5fVScWmozKOw4AL7ae3v-0c0wA3NnKJc4y/s1600/ShepardBB031.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJXl5hnO6uUjUGwhiuviN992ydRQmef1rsV0PZ4RgNWzoQjyHErDAhcDzYAtdW_44CBoG25P1NvL7PNsYbWvm7GvGQ4uQnwzmp1CPR02le9Z5fVScWmozKOw4AL7ae3v-0c0wA3NnKJc4y/s1600/ShepardBB031.jpg" height="211" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: xx-small;">Alyssa</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-indent: 0.5in;">
<span style="font-family: Calibri;">Alyssa is our daughter but she is
also forever a child of Texas.<span style="mso-spacerun: yes;"> </span>She was
a foster child who legally belonged to the state and people of Texas.<span style="mso-spacerun: yes;"> </span>When Alyssa was abused, the state stepped in
to protect her because as a society, we believe that it is our obligation to
care for our children when they need us.<span style="mso-spacerun: yes;">
</span>When we refuse treatment that could give an innocent little girl a
chance at normalcy and life without seizures or side effects, we are denying
our responsibility to her, and other sick children in our country.<span style="mso-spacerun: yes;"> </span>The failed war on drugs has created countless
victims, including several children with epilepsy who have died waiting for
laws to change.<span style="mso-spacerun: yes;"> </span>It is not just those
families who are broken right now, our entire country should be mourning the
loss of our children whom we failed to protect.<span style="mso-spacerun: yes;">
</span>I am adding my voice to the thousands of parents of children who are
demanding the legalization of medical marijuana <span class="usercontent"><span lang="EN" style="mso-ansi-language: EN;">because I believe that our children should
have access to a plant that is being effectively used to save their lives.<span style="mso-spacerun: yes;"> </span>It is time that we stepped back from
ineffective and non-scientific bans that keep medicine from kids who have no
other hope. </span></span></span><br />
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZVBefrKSBkObJ2ENpUKPmO_Qz7HedZYhSzsOtLW4RVor4Uqiw2aBRh0_-TDTVLdT3GxgIjlKG0rxVtFNrnyxjHX9LGdq8MJA3Bo3EDUnV-bh-dOoXJH4iinec6V1iTkMuxsmbwCfhPh2/s1600/IMG_7432.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZVBefrKSBkObJ2ENpUKPmO_Qz7HedZYhSzsOtLW4RVor4Uqiw2aBRh0_-TDTVLdT3GxgIjlKG0rxVtFNrnyxjHX9LGdq8MJA3Bo3EDUnV-bh-dOoXJH4iinec6V1iTkMuxsmbwCfhPh2/s1600/IMG_7432.JPG" height="213" width="320" /></a></div>
<span style="font-family: Calibri;"><o:p></o:p></span> </div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-58634514361919862742014-12-31T12:30:00.000-08:002014-12-31T12:30:08.979-08:00How the Stars Aligned in 2014
<br />
<span style="font-family: Calibri;"><o:p><div class="MsoNormal" style="margin: 0in 0in 8pt;">
This summer I took a brutal cross cultural course as part of
my master’s program.<span style="mso-spacerun: yes;"> </span>The class required
15 – 20 hours of reading per week along with several projects.<span style="mso-spacerun: yes;"> </span>It was exhausting.<span style="mso-spacerun: yes;"> </span>However, there was one project that I really
got into: the cultural self-portrait.<span style="mso-spacerun: yes;"> </span>We
had to create some type of art project that captured who we are and all of our
identities.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Times New Roman;">
</span><div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Times New Roman;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHiUzdBrDGRSW_3HR9BJUOJ5Cu934X-jYLsQEJKqr1nwEZsh3Vzf0AXp43RMI0F-KiyVdlr-hCZLJEZIf8q8BCabaqyg64hQWSqNOWBczRicN3sAewdAYUmR3kbAas1hiZL2WYyh9pCAC4/s1600/IMG_8059.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHiUzdBrDGRSW_3HR9BJUOJ5Cu934X-jYLsQEJKqr1nwEZsh3Vzf0AXp43RMI0F-KiyVdlr-hCZLJEZIf8q8BCabaqyg64hQWSqNOWBczRicN3sAewdAYUmR3kbAas1hiZL2WYyh9pCAC4/s1600/IMG_8059.JPG" height="254" width="320" /></a></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-align: center;">
<span style="font-size: xx-small;">I think we can all agree that I should continue to focus on psychology instead of art.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
I am madly in love with the night sky.<span style="mso-spacerun: yes;"> </span>I have been since I was little. As a teenager
my favorite chore was cleaning the kitchen because part of the job was taking
the trash out.<span style="mso-spacerun: yes;"> </span>I would wait until
everyone was in bed then walk barefoot down the driveway, listening to the
crickets, breathing the country air and watching the stars in wonder. <span style="mso-spacerun: yes;"> </span>I still feel the most at peace under a big
Texas night sky and I find myself drawn to it more when life becomes chaotic.<span style="mso-spacerun: yes;"> </span>So, for my self-portrait I created a
sky.<span style="mso-spacerun: yes;"> </span>I filled it with stars that I labeled
with titles such as student, mom, intern, or friend. <span style="mso-spacerun: yes;"> </span>I added race, gender, religion and orientation.<span style="mso-spacerun: yes;"> </span>I filled the whole canvas with stars of different
sizes then added a window to demonstrate that most people have a very limited
view of who I am. <span style="mso-spacerun: yes;"> </span>As I worked on my project,
I thought a lot about which labels deserved the biggest stars in my life.<span style="mso-spacerun: yes;"> </span>I also noticed that some stars were
differently sized than they would have been at another point in my life.<span style="mso-spacerun: yes;"> </span>Some parts of me have shined brighter, or had
a spotlight thrust on them, this year while others have faded out.<o:p></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Times New Roman;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
I dislike the idea of summarizing the year in four photos
and one cliché word or a listing of all my annual accomplishments.<span style="mso-spacerun: yes;"> </span>That doesn’t seem to fit.<span style="mso-spacerun: yes;"> </span>The sky however, has enough room for all the
stars in all their phases.<span style="mso-spacerun: yes;"> </span>This year my
faith flickered but is growing stronger again now.<span style="mso-spacerun: yes;"> </span>The advocate side of me shown brighter but
not because I wanted it to, it’s just that sometimes the choice to remain
silent is the equivalent of letting the darkness win.<span style="mso-spacerun: yes;"> </span>Fostering has faded for the moment because of
other obligations but student is going strong for one more semester. <span style="mso-spacerun: yes;"> </span>I developed a pretty mean roundhouse at MMA. <span style="mso-spacerun: yes;"> </span>I gave up on some toxic relationships but
found true friends in other places.<span style="mso-spacerun: yes;"> </span>There
were times this year when the storms hid the stars and I felt like there was
nothing left of me.<span style="mso-spacerun: yes;"> </span>There were other
times when the night was clear and the world felt alive.<o:p></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Times New Roman;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
Like any night, some parts of 2014 were darker than others.<span style="mso-spacerun: yes;"> </span>That’s life.<span style="mso-spacerun: yes;">
</span>That’s every year.<span style="mso-spacerun: yes;"> </span>I’m actually
hopeful for 2015, especially for the exciting plans that we have for
summer.<span style="mso-spacerun: yes;"> </span>I know that there will be challenges.<span style="mso-spacerun: yes;"> </span>I will be embarking on a new career in the
fall.<span style="mso-spacerun: yes;"> </span>The oilfield is pretty shaky right
now which is great for gas prices but uncomfortable when your husband is a
driller. Alyssa’s seizures have been pretty well controlled for a little while
now so hopefully we can maintain that. Noah
fully expects to have his Iron Man prototype up and running just as soon as we
buy him a welder.<span style="mso-spacerun: yes;"> </span>I have a few more sweet
months before my baby heads to school in the fall.<span style="mso-spacerun: yes;"> </span>No matter what lies ahead though, no matter
how clear the skies or how dark the storms, I know the stars will keep on
shining.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt; text-align: center;">
<span style="font-family: Times New Roman;">
</span><span style="font-family: "Calibri",sans-serif; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">Happy New Year!</span></span></div>
</div>
</o:p><div class="MsoNormal" style="margin: 0in 0in 8pt;">
</div>
</span><div class="MsoNormal" style="margin: 0in 0in 8pt;">
</div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-834897727900253222014-12-29T13:54:00.000-08:002014-12-29T13:54:02.908-08:00The Mom I Wanted to Be
<span style="font-family: Calibri;">I spent a short time with a local counselor last spring as I
was attempting to come to grips with Alyssa’s diagnosis.<span style="mso-spacerun: yes;"> </span>I quit seeing him after he suggested that it would
help if we thought about “just readopting Alyssa out.”<span style="mso-spacerun: yes;"> </span>I have a whole blog / rant in my head about
that but I’ll save it for later.<span style="mso-spacerun: yes;"> </span>One
thing that the <s>idiot</s> counselor said did help though.<span style="mso-spacerun: yes;"> </span>He explained how parents of kids with special
needs go through the grief process in much the same way that people do after a
death.<span style="mso-spacerun: yes;"> </span>We experience the stages of
denial, sadness, bargaining, anger and eventually acceptance or meaning
making.<span style="mso-spacerun: yes;"> </span>Our grief can be complicated
though.<span style="mso-spacerun: yes;"> </span>We often feel shame for being
anything other than the superhero that embraces their child’s uniqueness and
works hard to overcome every challenge.<span style="mso-spacerun: yes;"> We have an added layer of fear because many diagnoses are uncertain, lead to further decline or result in untimely death.
</span>We also tend to cycle through the stages repeatedly.<span style="mso-spacerun: yes;"> </span>There is a finality about death or a complete
loss that is different from living with a child with special needs.<span style="mso-spacerun: yes;"> </span>Every doctor’s appointment, teacher meeting
or random Saturday can bring to light some new limitation or loss. We grieve
all of these challenges that our children must face but also the idea of the child we expected
and the parent we wanted to be. <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I grew up on ranches and in the rodeo.<span style="mso-spacerun: yes;"> </span>I cleaned stalls and fed the animals.<span style="mso-spacerun: yes;"> </span>I raced my horses down trails that grown men
were afraid of. <span style="mso-spacerun: yes;"> </span>In high school, when backyard
wresting was popular with my friends, I was always willing to jump in the ring
with the guys. <span style="mso-spacerun: yes;"> </span>I was a tomboy in every sense
of the word and I loved it.<span style="mso-spacerun: yes;"> </span>I don’t
remember ever being told that there was anything I couldn’t do because I was a
girl. <span style="mso-spacerun: yes;"> </span>I wanted a daughter like that:
gritty, rough and tumble, adventuresome and fun. When I pictured my future
daughter, I always imagined her running in from the pasture holding a frog with
mud on her face or leading the boys out on some grand adventure. <span style="mso-spacerun: yes;"> </span>I used to say that my worst fear was to have a
little girl that wanted to be a cheerleader.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>I pictured her growing up to be a
cowgirl or doctor or the president or some amazing woman that would change the
world. She would be smart and strong and fearless.<span style="mso-spacerun: yes;"> </span>I love and adore my daughter for who she
is.<span style="mso-spacerun: yes;"> </span>I have also grieved the limits that
epilepsy has placed on her childhood and future. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I wanted to be that country mom who gives the kids free rein
as long as they are back at the house by sundown.<span style="mso-spacerun: yes;"> </span>I wanted to let all my children have the
freedom to build forts and climb trees.<span style="mso-spacerun: yes;"> </span>To
be fair, I don’t think that anyone is actually the parent that their childless-self
pictured.<span style="mso-spacerun: yes;"> </span>Everything changes when you become
responsible for another human being.<span style="mso-spacerun: yes;"> </span>For
the most part though, I take that laid back approach with my boys.<span style="mso-spacerun: yes;"> </span>I am comfortable with scraped knees and dirty
faces. <span style="mso-spacerun: yes;"> </span>I encourage them to take risks,
explore, and fully enjoy the privilege of a childhood lived out in the
country.<span style="mso-spacerun: yes;"> </span>With Alyssa, it’s different.<span style="mso-spacerun: yes;"> </span>Epilepsy won’t let me be the mom I want to be
to her.<span style="mso-spacerun: yes;"> </span>I can’t let her go off exploring
by herself because someone has to be there in case she has a seizure.<span style="mso-spacerun: yes;"> </span>I have to discourage risks because damage
could be too great.<span style="mso-spacerun: yes;"> </span>I have to balance
being the helicopter mom that her disorder demands with the part of my heart
that still desperately desires to let her run free with her brothers. <span style="mso-spacerun: yes;"> </span>Twice a week I go to an MMA class that has
been a god send for me.<span style="mso-spacerun: yes;"> </span>Noah attends the
youth class and Bradley loves punching the bags.<span style="mso-spacerun: yes;"> </span>In a few years, he’ll be out there fighting
with us too.<span style="mso-spacerun: yes;"> </span>Alyssa gets to stretch with
me beforehand but that is the most involved she will ever be.<span style="mso-spacerun: yes;"> </span>Her doctors have been
very clear that she cannot sustain a hit to the head and is not allowed to fight.<span style="mso-spacerun: yes;"> </span>My daughter, my only little girl, is different
than the boys.<span style="mso-spacerun: yes;"> </span>I understand that it is
because of the epilepsy and that one blow to her head could be devastating.<span style="mso-spacerun: yes;"> </span>Still, there is a pang in my chest when I
look to the side and my daughter is the one who isn’t allowed to participate.<span style="mso-spacerun: yes;"> </span>This isn’t the mom I wanted to be.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Children rarely grow up to be exactly what their parents
pictured.<span style="mso-spacerun: yes;"> </span>Many parents struggle to
accept that their kids have chosen different paths.<span style="mso-spacerun: yes;"> </span>The difference is that parents of special needs
children grieve because the different paths were not chosen by our children;
they were forced on them.<span style="mso-spacerun: yes;"> </span>We aren’t the
angels (or demons) that the media portrays.<span style="mso-spacerun: yes;">
</span>We are human.<span style="mso-spacerun: yes;"> </span>We are facing
challenges that most of us never expected.<span style="mso-spacerun: yes;">
</span>We grieve in many ways over many things.<span style="mso-spacerun: yes;">
</span>Sometimes it looks like denial or rage or depression.<span style="mso-spacerun: yes;"> </span>Often it is mixed with fear and shame.<span style="mso-spacerun: yes;"> </span>Sometimes it is triggered by the big things
like declining health or seizure clusters.<span style="mso-spacerun: yes;">
</span>Sometimes we are responding to the realization that one more hope has
been dashed or one more limit has been added to an already long list.<span style="mso-spacerun: yes;"> </span>Sometimes it is simply difficult to live with
the fact that the moms our children need are not the same as the ones we
planned to be.<o:p></o:p></span></div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0tag:blogger.com,1999:blog-2606143487226169171.post-18948884450183874572014-12-27T22:58:00.001-08:002014-12-27T22:58:44.940-08:00Christmas with Epilepsy<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">There is a misconception in the outside world (ie: everyone
not living with a person who has epilepsy) that as long as a person is not
actively having seizures, all is well.<span style="mso-spacerun: yes;"> </span>That
may be the case for some families dealing with less severe forms of the
disorder but epilepsy is a constant presence for many people, even when the
seizures are less frequent.<span style="mso-spacerun: yes;"> </span>We were
fortunate this year to make it through Christmas without a cluster.<span style="mso-spacerun: yes;"> </span>We survived family, chaos, presents and
irregular schedules.<span style="mso-spacerun: yes;"> </span>We had a great time
with my grandparents who flew in from New York so that my grandmother could
make us a traditional Italian dinner.<span style="mso-spacerun: yes;"> </span>In
all of the festivities though, <a href="http://www.pcdh19info.org/" target="_blank">PCDH-19</a> was always lurking in the shadows.<span style="mso-spacerun: yes;"> </span>I don’t want the three people reading this to
get idea that I'm complaining or that we have had a particularly hard time this season.<span style="mso-spacerun: yes;"> </span>For the most part, we had a wonderful
Christmas.<span style="mso-spacerun: yes;"> </span>Since it did go fairly well
though, I think that this is a great opportunity to share a few of the ways
that epilepsy impact families like mine, even on the good days. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy2PV7BzDIcHPyRc5fZjCt4XBBxQldu4qksOfjQqqWjNvOCIZiFZNiI1fEKF-v_M6Qm9AdwTRZshlvKOqfdl_aNoCX3TN2qRNDnOPBbNmRMq3JKXukfRyCAqQK_ZTQKW4jpyDoLwuiUVEE/s1600/IMG_7793.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy2PV7BzDIcHPyRc5fZjCt4XBBxQldu4qksOfjQqqWjNvOCIZiFZNiI1fEKF-v_M6Qm9AdwTRZshlvKOqfdl_aNoCX3TN2qRNDnOPBbNmRMq3JKXukfRyCAqQK_ZTQKW4jpyDoLwuiUVEE/s1600/IMG_7793.JPG" height="320" width="213" /></a></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">On Christmas Eve my family’s festivities started at 2:00 in
the afternoon.<span style="mso-spacerun: yes;"> </span>I was there as we all sat
down together for the first of four courses of pure awesomeness.<span style="mso-spacerun: yes;"> </span>Alyssa, however was not.<span style="mso-spacerun: yes;"> </span>Curt stayed home and brought her later in the
afternoon so that she could get a full nap.<span style="mso-spacerun: yes;">
</span>We also had to leave the party sooner than we would have liked to make
sure that she was able to be well rested the next morning.<span style="mso-spacerun: yes;"> </span>Unlike her cousins or her little brother,
missing a nap is simply not an option for Alyssa.<span style="mso-spacerun: yes;"> </span>A lack of sleep can trigger seizures for
people with epilepsy.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Even on the holidays, we have to build our
days around rest in a way that most other families do not.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Christmas is kind of a perfect storm when it comes to
stress.<span style="mso-spacerun: yes;"> </span>The combination of cramped
schedules, expensive wish lists and seeing family we may prefer to love from a
distance can be a lot for anyone to handle.<span style="mso-spacerun: yes;">
</span>Even the positive stress of opening 4,985,157 presents can be
overwhelming for lots of kids.<span style="mso-spacerun: yes;"> </span>Add all
of that to a sugar high and meltdowns are bound to happen with the best of
children.<span style="mso-spacerun: yes;"> </span>I notice that my boys are more
emotional than normal and act out in ways they normally wouldn’t. That is what
I consider typical.<span style="mso-spacerun: yes;"> </span>Epilepsy goes a step
farther when stress is involved.<span style="mso-spacerun: yes;"> </span>Stress,
like a lack of sleep, can cause seizures.<span style="mso-spacerun: yes;">
</span>The first time that Alyssa had seizures after she came to live with us
was on Christmas day three years ago.<span style="mso-spacerun: yes;"> </span>The
neurologist wrote a letter to the judge after that episode detailing the stress
that Alyssa was under and stated that he believed her anxiety about changes to
family visits was the cause of that cluster. <span style="mso-spacerun: yes;"> </span>Stress can also cause smaller neurological
problems for Alyssa.<span style="mso-spacerun: yes;"> </span>She gets much more disoriented.<span style="mso-spacerun: yes;"> </span>She may have to be reminded about the same
simple command multiple times or she may ask the same question repeatedly. <span style="mso-spacerun: yes;"> </span>In many ways, Alyssa is similar to her three
year old brother and has to be watched accordingly even though it can be
tempting to allow her the freedoms normally allowed to other kids her age. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The last time that we visited Alyssa’s epileptologist (a
neurologist who specializes in epilepsy), she discussed her concerns about
Alyssa’s impulsivity.<span style="mso-spacerun: yes;"> </span>The combination of
medication and damage caused by previous seizures has resulted in very high
levels of impulsivity for Alyssa.<span style="mso-spacerun: yes;"> </span>She often
acts before she thinks or does something she has been warned about only moments
before.<span style="mso-spacerun: yes;"> </span>Again, this is above and beyond
what would be expected for a typical 5 year old. That has the potential to be
dangerous because she may not assess the risk involved in an activity before
diving in.<span style="mso-spacerun: yes;"> </span>This week we witnessed it in
a much more minor manner.<span style="mso-spacerun: yes;"> </span>All the ladies
in my family spent the afternoon at Painting With a Twist and I brought Alyssa
along for some fun girls time.<span style="mso-spacerun: yes;"> </span>They have
an instructor who walks you through each step of the painting so that everyone
ends up with a (somewhat) similar piece at the end.<span style="mso-spacerun: yes;"> </span>In the beginning, Alyssa was following along
fairly well.<span style="mso-spacerun: yes;"> </span>Her lines were less defined
than the most of the adults’ but she was obviously trying to replicate the
instructor’s work.<span style="mso-spacerun: yes;"> </span>Then we came to a
more complicated step that several people needed help with.<span style="mso-spacerun: yes;"> </span>About a minute into the pause, I looked over
and Alyssa’s entire canvas was covered with giant crosses.<span style="mso-spacerun: yes;"> </span>When there was a defined task to be completed
she was fine but she could not leave her brush laying down in the dead space.<span style="mso-spacerun: yes;"> </span>On the plus side, my Christmas tree will
likely only come out once a year while she now has a beautiful piece of
abstract art hanging on the wall year round.<o:p></o:p></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2_VJSuWKBF8SMetfWLt4fVNypDfxVIJnW6fHKPw3kKR_1ksb14RdoCtQPYF8U25rzGtHS7pkN2jlves2Zrhkjl4r_24YVRNRMh3tcT35ukFsYon39duB3Kg0tHg8AdM5IpRDF6iGmK8sv/s1600/1544483_10152965102528606_8501747308544665801_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2_VJSuWKBF8SMetfWLt4fVNypDfxVIJnW6fHKPw3kKR_1ksb14RdoCtQPYF8U25rzGtHS7pkN2jlves2Zrhkjl4r_24YVRNRMh3tcT35ukFsYon39duB3Kg0tHg8AdM5IpRDF6iGmK8sv/s1600/1544483_10152965102528606_8501747308544665801_n.jpg" height="320" width="320" /></a></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<br />
<span style="font-family: Calibri;">
People often ask me if Alyssa is still having seizures and we are fortunate to
have made it several months without any tonic clonics.<span style="mso-spacerun: yes;"> </span>However, I think it is important that people understand
that a break from seizures does not equate to a complete healing.<span style="mso-spacerun: yes;"> </span>She has made great strides over the past year
and we are hopeful that she will continue in this direction.<span style="mso-spacerun: yes;"> </span>In Buzzfeed style, I now leave you with my
list of 10 ways that my family feels epilepsy on the good days.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">1.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">No matter how many people are in the house, her
bathroom door must always be unlocked so that we can get to her in an
emergency.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">2.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Changes in diet have a huge impact on Alyssa, so
even on special days she can’t live on only chocolate.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">3.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">At the end of a long day, our bedroom door stays
open so that we can hear the horrible scream if all our precautions weren’t
enough to keep the monster at bay.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">4.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">We mix Alyssa’s Depakote into cool whip because that
is the only way she will take it.<span style="mso-spacerun: yes;"> </span>She
was NOT enthusiastic about seeing homemade whipped cream covering her Christmas
morning pancakes. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">5.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">When the parents of children with PCDH-19 talk, the
conversation always seems to end up on behavioral and emotional struggles.<span style="mso-spacerun: yes;"> </span>Alyssa often has trouble regulating her
emotions, similar to a child much younger than her.<span style="mso-spacerun: yes;"> </span>During the holidays, this can be more
pronounced because there is so much for her to process, less time to do so and
often there is an audience.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">6.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Alyssa LOVES to play with hair and will
impulsively start trying to style anyone sitting low enough for her to reach their
head.<span style="mso-spacerun: yes;"> </span>We are practicing asking people
BEFORE we style their hair… sometimes she still forgets. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">7.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">The flu has been bad in our area recently and
any sickness or even a low grade fever can trigger a cluster for Alyssa.<span style="mso-spacerun: yes;"> </span>That means that a simple flu could do
irreversible brain damage to my child.<span style="mso-spacerun: yes;">
</span>It can be challenging to balance the desire to give her a typical
childhood with the urge to protect her from every potential harm.<span style="mso-spacerun: yes;"> </span>Every Christmas parade, holiday event or party
invitation can trigger a lengthy internal debate for me. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">8.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Sometimes the best answer for our family is
no.<span style="mso-spacerun: yes;"> </span>I dislike missing family outings so
that we can make an early bedtime.<span style="mso-spacerun: yes;"> </span>I
hate having to scale back when my nature is to overdo the holidays but I know
that going overboard could mean serious trouble for us.<span style="mso-spacerun: yes;"> </span>Sometimes I still resent it though. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">9.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">The focus on rest, relaxation and health can be
good for all of us.<span style="mso-spacerun: yes;"> </span>After a particularly
stressful period on Christmas day, Curt and I took the kids for a walk in the woods.<span style="mso-spacerun: yes;"> </span>It was just the 5 of us enjoying the peace of
nature and it was one of my favorite times of the day.<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">10.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Our family traditions are constantly being
adapted to better fit her needs but we make changes with the knowledge that it
may not be enough and that those changes may not be in the best interest of our
boys.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXf_9Yd16JXZ4yTmQT6VUQe9_8c6QpQhM_xjH8otCoV7tJUFr8an640MvSVdX4cPPYQZkqziGnjyg5a0HTLHvyzli6p9tZLqVQNvivQvopjbPMpueI3mfjpHcQ-PClZ2j222tpCFdCo8dM/s1600/IMG_7952.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXf_9Yd16JXZ4yTmQT6VUQe9_8c6QpQhM_xjH8otCoV7tJUFr8an640MvSVdX4cPPYQZkqziGnjyg5a0HTLHvyzli6p9tZLqVQNvivQvopjbPMpueI3mfjpHcQ-PClZ2j222tpCFdCo8dM/s1600/IMG_7952.JPG" height="213" width="320" /></a></div>
<span style="font-family: Calibri;"><o:p></o:p></span> </div>
Mom with an Asteriskhttp://www.blogger.com/profile/13318933003721686987noreply@blogger.com0