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www.momwithanasterisk.com

Thankful for Tea and Motherhood

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.)

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.

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.

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.

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.



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.

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. 

Plastic Smiles

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. 

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.

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.

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. 

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.

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.

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.

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.  

Leave the diagnosis at home this Valentine’s Day

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. 

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.

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.

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.

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.

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. 

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. 

January Rules

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 crap 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:

Do not fly your new drone in my room while I am sleeping.

I am not responsible for any damage caused when I wake up screaming and bat the flying demon monster away from my face.

Only Elsa dolls get to stand on your new Frozen castle like she did in the movie.

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.

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. 

Well I guess Hello Kitty and My Little Ponies are OK.  Basically just no humans allowed on the cardboard balcony.

Do not build Lego machines that run on Barbie doll hearts.

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.

Do not put any (more) baby puppies in your stuffed animal net.

Also, little boys are not allowed in the stuffed animal net even if they are pretending to be a teddy bear.

This is Smith Wigglesworth.  His butt wiggles when he walks. 

Your toys are not allowed to play guitar after bedtime.

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.

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?

Dear Daughter: It’s OK to hurt.

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.

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.

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. 

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.  

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. 

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. 

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.

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.

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.

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. 

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.

Let's continue this conversation on Facebook and in the comments below.

The Difference Between Mommy Guilt and Mommy Shame

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.

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. 

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.

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.

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?

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.

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. 

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. 

The next time that mommy guilt or mommy shame are competing for space in your life, try thinking through these questions:   

     Is this something I should feel guilty about?

     Am I remembering to focus on what I DID instead of who I AM?

     Do I feel more guilt than I should about what I did?

     How would I like to address this situation differently in the future or make repairs with the person I hurt?

     How can I make repairs and extend grace with myself?

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 facebook page.  


*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 website. Remember that there is no shame is getting help.

Disaster Relief in Garland

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. 

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^th, 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.

This trailer park was one of the hardest hit areas.

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. 

When we first arrived and parked at the base, a man named Abram from Renova Community Organization 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.  

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.  

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.  

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. 

There is still so much work to be done.

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.  

I am so proud to be married to a guy that works so hard to help others.  He really is amazing. 

High Heels in Church

   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.

   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. 

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.

   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.

The heels.

   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.

   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. 

My stars: Alyssa and Bradley holding the N and backwards E. 

   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.

   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.

That smile.

   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.

Our family

In hindsight, I probably should have asked them to hold still
for a picture BEFORE they hit the dessert table.

On the Anniversary of her Diagnosis

Today is the two year anniversary of my life as Humpty Dumpty.  On December 11, 2013, I stood in a WalMart parking lot and answered the phone call that changed everything.  That was the day that I broke. 

When Alyssa came to us, I knew that she’d had seizures as a baby.  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.  She said Alyssa didn’t have epilepsy.  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.  Then, a year later the seizures hit with a vengeance.  This time they didn’t say that it was a fluke or something that she would grow out of.

For months, Alyssa seized no matter what the doctors did and she kept losing ground cognitively.  Eventually, things started to settle down and we would sometimes go a few weeks between seizures. Her doctors remained worried though.  We were on our last available medication so if the seizures got worse again, our options were limited.  Alyssa’s neurologist referred us to an epileptologist who advised my husband and I to begin considering surgery.  They wanted to remove the part of her brain that the seizures were originating in.  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.  

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.  Even the preparations for the surgery was dangerous.  She would need to spend a week in the hospital and come off of all her medications.  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.  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.

I finally agreed to the surgery on one condition; I wanted genetic testing first.  No one could tell us why Alyssa was seizing and we had learned that there are some types of epilepsy that have genetic causes.  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.  The doctors were annoyed, especially when insurance initially denied the testing.  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.  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.

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.  Our epileptologist told me that the results were back and they changed everything.  She told me that Alyssa had a genetic disorder called PCDH19 epilepsy.  Of course I had never heard of that.  At the time there were only about 200 girls in the world who had been given the diagnosis.  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.  I learned that Alyssa was at a higher risk for SUDEP and a shorter life expectancy.  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.  I felt like I was Humpty Dumpty being pushed off the wall.

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.  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.  My husband works in the oilfield so there have been many times when things were difficult and he was gone.  Every time I really need him though, he is there and that day was no different.  We fell apart together that afternoon. 

When the tears finally slowed down, I wanted to crawl in bed and never get out.  I didn’t think I could face the world again.  The IQ numbers kept rumbling through my mind.  You see, I have never been one to care much about sports or popularity or physical perfection.  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.  It all seemed so cruel and hopeless.  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.  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.  I’m sure I looked like a ragged mess when I walked in and said that hitting was all I had in me.  He never prodded but I spent the next hour taking my devastation out on the heavy bag.  Then I went home and went to bed.

I hated the sun when it came up the next morning.  The world seemed so happy and normal but it wasn’t the same.  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.  When I hung up the phone, I Googled the random string of characters that I didn’t understand but already hated and found the Alliance and the Facebook group that I would come to depend on.

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.  I even grieved the loss of the surgery I had been so afraid of.  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.  In January we hit the one year anniversary of the seizures starting and I hit rock bottom.  It’s hard to live without hope.

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.  Finding out that your child won’t ever be ok is that kind of broken.  You can try to patch things up but they won’t ever be the same again.  It takes time to come to grips with that and the process can be dark and lonely.

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.  I’ve had the time and space to get made about being pushed off the wall.  I worked on grieving the broken pieces and accepting that they won’t ever go back together the way they were before that call.  I’ve also realized that there is some beauty in brokenness.  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.  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.  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.

Adoption & Epilepsy

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. 

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.

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.

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 Holland 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. 

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.

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.

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.  

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. 

The Problem with Re-homing

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.  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.  After the adoption, the girls’ behavior grew worse.  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.  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.  The girls have now been adopted again and are reportedly doing well.

The Harris adoption fiasco has bothered me since the news first broke.  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.  This couple might have been fine adoptive parents to the right kids.  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.  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.

The Harrises claim that they reached out for help after the adoption and were not able to access the services their daughters needed.  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.  They can be extremely violent even at very young ages.  Often they become homicidal or suicidal and everyone in the home is at risk of severe harm.  Stories abound of children with RAD killing pets, sexually abusing siblings, burning down homes with people inside, or attempting suicide.  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.  Instead, children with RAD are bounced between inadequate providers or sent home where they are a danger to their family and themselves.

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.  They say that they were told that if they relinquished their parental rights to their children, they would be charged with child abandonment.  The problem is that they were not given any other options.  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.  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.

I wrote recently about my own experience with a therapist who assumed that I should “just re-adopt out” my daughter because things were difficult.  It was insulting because the suggestion meant that he did not see my family as one worth preserving.  I didn’t go in as someone who was scared for her life or that of her other children.  I went to him as a grieving mother who was trying to make sense of a devastating diagnosis.  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.  That attitude is unacceptable but it is sadly prevalent among the people that adoptive parents reach out to for support.  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.  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. 

The problem with rehoming, as it currently exists, is that it fails both the children and the adoptive parents.  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.  In addition, many of the kids who find themselves in new homes are later abused or abandoned again.  With no government or agency oversight to make sure that the new homes are safe for these children, the outcomes can be devastating.

That the problem of rehoming exist in the magnitude it does is evidence that there is a problem with the child welfare system.  When parents go through classes to foster-adopt, we are promised help after the adoption.  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.  We are assured that if we do what we are trained to do, the children will get better.  Unfortunately those are often empty promises.  

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.  The problem is that there is not an acceptable alternative for situations where the child cannot safely remain with their family.  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.  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.  We have to put down our torches so that we can see the hurting people who feel like they have no other options.  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. 

I welcome your thoughts on how we can come together as a community to help adoptive families who are struggling.  Let’s continue this conversation on Facebook or in the comments below.

 

*In most cases, children who are adopted from foster care are able to keep Medicaid.  This helps people adopt who would not have been able to because of the high cost of medical care. 

Should Everyone Consider Adoption?

   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. 

   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. 

   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. 

   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.

   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?

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 Facebook.

To the New Epilepsy Mom:

I recognize that look in your eyes.  It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream.  Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures.  Maybe you are feeling broken having just received your child’s diagnosis.  Maybe you are ready to curl into a ball and hide because it all feels so overwhelming.  I’ve been there.  I’m still there sometimes.

When my daughter started seizing, the world turned upside down.  When we finally received her diagnosis of PCDH-19 Epilepsy, I broke.  I felt alone and scared and confused.  I didn’t know what to do or who to turn to.  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.

1.       You are not alone.

I know you feel alone.  I know that it seems like no one understands.  Many of us who have been on this road for a while understand the terror and we are ready to walk beside you.  You can find us through your hospital’s social workers, online groups or Parent to Parent.  We want to be there for you.  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.

2.       Build your team. 

The old adage about needing a village to raise a child will become especially true.  There will be doctors, nurses, therapists, and social workers. (You’ll notice that I wrote every one of those in the plural.  That was on purpose.)  The relationship with your child’s teachers or babysitters will grow to a whole new level.  Take the time to talk with your team until you have your questions answered.  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.   

3.       Ignore the idiots.  

People will tell you that they know what it’s like because their dog had a seizure.  People will tell you that garlic or lemons or copper bracelets cured epilepsy for their father’s cousin’s friend’s co-worker.  In my experience it is better to roll your eyes than punch them in the nose. 

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.  Realize that most people just don’t know the facts about epilepsy.  You can educate them if you choose but don’t feel guilty if you need to simply walk away.  It can also help to ask a friend to keep people informed so that the burden doesn’t fall entirely on your shoulders.   

4.       Be who you are. 

It’s easy to look at those “super moms” who seem to have it all together.  They balance all of their child’s special needs with their hair in place and advocate tirelessly without messing up their makeup.  I am not one of those moms.  My hair is never in place, my mascara is usually smudged and I am not always the most diplomatic person.  I used to alternate between feeling guilty for not being them and being angry at them for making me feel guilty.  Now, I’ve realized that most of them aren’t quite as perfect as I thought.

I also learned that many people cope with their child’s epilepsy by advocating.  If that’s you, perfect.  Write letters.  Demand action.  Go on fund raising walks.  All of those are great things to pour your energy / anxiety into.  If raising awareness or funding research helps you cope, then go for it.  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.  If you don’t want to share your story, you don’t have to.   Work on finding a way to battle epilepsy that fits for you and your family.  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.  You have enough on your plate already.

5.       Understand that your friends may change.

Sometimes the people who you thought would be there through thick and thin disappear because seizures are scary.  Sometimes people step up in ways you never imagined.  Your life has changed now and because of that so will many of your friendships.  Mourn the ones you lose but don’t spend too much time being bitter.  You have bigger battles to fight than that.

6.       Keep going.

Treating epilepsy is complicated.  Your child may need to be seen by multiple specialist and they may not be able to get the seizures under control immediately.  Don’t give up hope when the first medications don’t work or the second or third.  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.  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.  Many people never get an explanation but with time are able to find treatments that help. 

7.       Trust Your Gut

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.  Do your research and ask questions until they are answered.  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.

Also understand that epilepsy is more than seizures.  It can impact motor, speech, cognition and behavior.  If you think that your child is acting different, don’t be afraid to tell the doctors.  If you think something might be related, speak up.  Through it all, trust your intuition.  When something feels off, pay attention.  You know your child better than anyone else.  That is a knowledge set that the best specialist on the planet doesn’t have.  Never doubt its value. 

8.       Cry.

Or scream or laugh or punch a wall.  Epilepsy sucks.  This monster just invaded your family and is attacking your child. Fall apart for a little while.  The world won’t end if you do.  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.  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.      

9.       Breathe. 

Whatever you need to do to be ok, do it.  It may feel selfish to leave your child right now just so that you can get a manicure.  It’s not.  Your child needs you to take a break so that you can come back refreshed enough to be the advocate they need right now.  Parenting a child with special needs is absolutely exhausting.   

10.   Know that you will change.

You will never again be the parent, or the person, that you were before your child started seizing.  Every jerky movement will trigger something terrifying in your brain that other parents simply cannot understand.  Small joys like bubble baths will suddenly look like watery graves.  There will be good changes too though.  You will find that you can fight harder than you ever thought you could. You will figure out what in life really matters. 

I know you didn’t want this.  I know that you’re scared.  Believe me when I tell you that the sun will come back out at some point.  So, give yourself some grace, reach out to the mamas who have gone before you, hug your baby and just keep swimming. 

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