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.