Wednesday, December 30, 2015

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.

Friday, December 11, 2015

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.