Thursday, September 27, 2012

growth attenuation... complete

I opened the letter, skimmed the three page report, and tears started pouring in silent streams down my face.  Worried, Belle asked why I was crying, but I really didn't know what to say or how to put it all into words that an adult could understand, let alone what would be sufficient and appropriate for a child.  Have you ever had an emotional response upon hearing some news before your head realized why?  It's unusual for me because typically I can rise to most occasions and process the feelings that go with it later.  I react well and function, even under some pretty hefty circumstances and can shelf my emotions until I have the time and energy to take them on.  I'm the gal you want around in an emergency because I can unplug my emotions and function appropriately.  Later... sometimes months or even years... I process those long past emotions and find myself laid up for a few hours or a few days with a stack of tissues and a journal or computer to recollect long past moments.
Today was different...
the tears came first because the report marked an end rather than a beginning.  The process has been long, but now it's apparently done.  We've made some tough decisions that parents of a nine year old should not have to make, but that's the life we've been given.  This time we had to do it more alone than we would've liked and marked a turning point. 
We've tried to be normal.  Living a life of abnormality but slowly realizing we're not normal. Somehow this process has helped us accept our circumstances on a more permanent level.  Once the decision was made, we never looked back or second guessed ourselves... looking back, that in and of itself is a blessing and confirmation of a God given peace.  The answer(s) to Abby's needs aren't everyone's.  Each child is uniquely created and should be treated as such.  In no way do we think Abby's case should set a precedent or become common place.  The horribleness of that idea sickens me to the core, yet it was absolutely appropriate for her no matter how much that reality hurt this mom's heart.

After six months to a year of preparation, preceded by years of under development, continued lowering of expectations, several doctor appointments, the hospital ethics board's signature of approval, and an insurance sign off, we woke up one early morning to take Abby to the hospital for surgery.
Our hearts were in our stomachs, as the threat of controversy or people protesting lingered in the back of our minds.  A girl in Europe (lower functioning than Abby) made international news regarding the same operation Abby was about to undergo.  We chose to tell a few friends/family what was going on for support and prayer as we headed into the hospital.  There were no questions about what needed to take place, but the gravity of the day appeared in a few stray tears that trickled down my face and continued off and on silently throughout the next few days.

Abby had made little to no progress in the previous year or two leading up to her surgery, but... who was counting, right?  I've learned not to dwell on the lack of progress and to just celebrate it as it happens, but this time we had a battery of observers to affirm the reality that she wasn't going anywhere very fast. Her lack of ability to use a communication device, to sign or vocalize to tell us if she had an upset stomach or sore throat, or any effective means to communicate pushed us further to avoid the monthly ups and downs of menstruation.
I distinctly recall many dark days wondering if Abby would one day have to be removed from our home if she continued to escalate with her aggressive behaviors.  She was hurting her little sisters, parents, and often any stranger within arms length.  We'd exhausted the list of meds from psychiatry, behavior psychology analysis and modifications, sensory strategies, and the existence of non-diagnosed pain or discomfort.  I think the reality of her low functioning had to be addressed emotionally for us too, before we could even consider doing what we knew might need to done...
  • no dating relationships, wedding, or baby
  • no living alone or total self care without supervision
  • no prospect of leaving our home and venturing out as an independent adult 
Every so often, a close friend or family member would observe us trying to wrestle her into a blanket burrito to restrain her in order to calm her down and ask what we intended to do when she got bigger.  Andy & I always found that question somewhat ridiculous, so in our sarcastic way one of us would say in a matter-of-fact voice, "Give her away", or "let her come live with you"
Come on! We didn't always know what we were going to do with her today or tomorrow... let alone the future!  A family member even told us we were going to have to start thinking about what to do with her... REALLY, as if that nightmare hadn't haunted our dreams since she was two!
...back to the day of surgery
Pre-op was amusing to say the least once she was given Versed to calm her down.  I had to share some of those videos.  She was awesome!  She made us laugh, and the Lord knew we needed a laugh during those moments.  The doctor (a Christian man I've talked about in previous posts) came in and with a knowing hand shake and half smile promising to take care of our big girl and they were off flanked by nurses keeping her in the bed... as she was trying to "walk with her butt" (she was all over the place)   :D

They allowed me to sit in post-op next to her as her current craziness knew no bounds. Also, Abby waking up in complete confusion might be more than the nurses would've been prepared for. I would usually have to lay on her when she comes out from being under like this because she was so hysterical. I sat next to her bed with my head propped up on the rails as she slept while the tears rolled down my cheeks (and once again now as I'm reminded of that day).  I tried to hide them from the kind nurse who kept watch on her (us), but eventually he pulled up a chair.  In his kindest voice he stared off at my sleeping princess and said, "I don't understand."  I explained the best I could to someone who didn't know her more than the picture of a perfect angel lying in the hospital bed, but I couldn't adequately put nine years into a coherent thought or two... especially at that moment.  He was kind, caring and gentle but I knew then and there that many would not understand either, and it might not be fair to ask them to.  We would do what we must... as we have always done.  Some decisions are tough and others are impossible.  

We spent a couple days in the hospital... alone.  We hugged each other and took turns cuddling our firstborn in her hospital bed as many of our dreams for her somehow seemed to fade into the walls during that stay.  See, the dreams we had were never possible, but it took years before we would let that sink in and make decisions based on it.  The tears soon dried up, we made our way home, and began the second phase of this journey.

I've decided to veer for a moment for you and for those like me in your life... Remember, as you read this that I write for me and for you to understand me, but also for others like me.  Which is why I've sat on this post for over a week trying to decide how to put this into words without the anger that is long gone.  We are so better two years later, but at the time this was hard to do alone.  There are no books to prepare parents or friends/family for these moments, but it doesn't make the lack of response okay or something not to address.  I want to help others get better support if they are in your life, so I'll do the best I can.  Please keep in mind that I'm writing the emotions as they were two years ago rather than what they are today...
We weathered the hospital with no cards, flowers, balloons or visits from friends or family, save my girls and parents after I called and asked them to come.  I wanted to shield them from this, but I also needed them to share it, as it was part of their story in our family as well.  Our pastor did call to see if we wanted a visitor but we declined as we felt somehow like it was asking him (kind of crazy looking back).  Abby wouldn't know or care... but her parents did.  We didn't come home to a meal prepared, a phone call, or even an e-mail.  In all fairness to most of you, we didn't tell many as we feared push back from the disability community.  Obviously, they (like us) don't want this to be a precedent, but on too many occasions recently they've taken up cases like this and slapped a the sticker of "violation of reproductive rights" on it without knowing each situation. One of the biggest, toughest moments in our lives passed... unnoticed.  I grieved in silent pain for months.  I didn't know how to explain the "Loss of a Dream" that I was experiencing and yet didn't know how to reach out for help.  I didn't know how to help myself let alone tell someone else what to do.  We moved forward until the rawness wore off, but I guess I hadn't processed the emotions of it until I opened the letter...

We had the surgery earlier than we may have had to do, but decided it was best to get her through puberty as fast as possible.  Stage two was limiting her growth a bit so she could remain ambulatory and easier to manage, otherwise known as growth attenuation.  Moving is crucial for kids like Abby as sensory is fed in the movements, as well as the health of her entire body.  With me being almost 5'11 and Andy over 6 feet tall, she had the ingredients for significant stature.  Abby walked independently around six and once she started walking, I can say she still takes my breath away when she walks into a room.  If she ends up in a chair it wouldn't be the end of the world, but if we can keep her out of one, it would be worth it.

Within the next couple of weeks we decided, with the help of her endocrinologist,  to dive right into the extra hormones to get her going.  We prepared to endure a year or two of complete craziness, as hormones can have that effect... especially in such large dosages.  We hit about half the dose we were shooting for and the most amazing thing took place...
It was like a light was switched was turned on...her complete uneasiness and irritability seemed to drain away.  Sure, she was (and is) still grabby at times and can be aggressive, but it was different.  She actually had times of contentment.  She could be distracted and contained.  She would ride in her chair more often and not attack everyone around her.  

Two years later, a few bumps along the way, several extra blood draws and x-rays...

Now you may understand the tears.  The letter stated that Abby is finished growing.  At almost 4'8" she will probably stay...give or take an inch max.  The little girl before me is also the young woman she will be... for life.  For the couple of years that I thought would be hell, weren't all that bad; but now we get to see who she will be... who she can be.  A steady low dose of hormones and weight management should help her in the long haul, but now we just focus on today.  Another great and unexpected side effect of closing her growth plates early was hip socket formations.  She lacked appropriate hip sockets and her hip bones have been 30% to 50% out of place for the past several years.  After our last trip to see the orthopedist it was discovered that the socket was forming and now surgery is less likely, rather than just a matter of time.

My big girl... such a little girl.  loud as can be... deafening at times... tearing my house apart... throwing everything on the floor, yet giggling all the time!  So happy... aggressively happy, queer combination to be sure!  I wonder what it all means?  I just know that we're glad to put this behind us and excited for what is ahead!

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