Avery Grace

Avery Grace

Wednesday, September 12, 2012


I recall the moment.  The exact minute when the first doctor told me for the first time that something was wrong with my sweet baby girl. My first born.  My sweet Avery Grace.  I had so many hopes and dreams for her.  She was so wanted, so loved, so precious to us.  She was 4 months old.  By six months we had a name for the mysterious "spots" on her trunk, face, arms, and legs.  Her very first diagnosis.  Mastocytosis.  I was so naive then.  So hopeful, and so silly.  If only I knew then the path we were headed.... I would have turned and run screaming.  I NEVER imagined such heartbreak.  Such despair.  Such.... a loss.

Fast forward 6 years. I bet I have aged 20.  I would FAIL a stress test.  My mind and body have endured warfare.  I am, by all accounts, overwhelmed. Avery is 6 and a half.  She is beautiful.  She has not made any notable developmental progress since she turned 1.  She has, actually, regressed since then.  Over, and over, and over again. We have had two additional, beautiful daughters since then.  Three total. Thank GOD, our second and third blessings are "typical."  A nice way of saying, they do not have Autism. 

When Avery was 19 months old, I drove away from her neurologist, and cried as I talked to my dad on the phone and explained that Avery had been diagnosed with Autism and Apraxia.  My dad was tender, loving, supportive, and optimistic.  We all were.  Surely Avery would make excellent progress. I was, after all, an autism "expert."  I was already certified in floortime and RDI, and "thought I" knew exactly how to help her.   Whatever.  Soon I would see that my child, (and I have worked with over 100 children on the Autism Spectrum) has the most severe and debilitating kind of autism. She is 6, non-verbal, not potty trained, can not imitate, and does not understand language.  Fuck.  Now what?

So here we are, plugging along, and her therapists and nanny start to notice a change in her. She "checks out" and "twitches."  SHIT.  What is going on.  I try to stay in the moment.  Don't jump ahead.  It will end up being "inconclusive" like every other MRI, EEG and other genetic, blood, and brain test we have had run on Avery.

But, today it wasn't inconclusive.  Today her neurologist confirmed that Avery has epilepsy.  That she has MANY seizures a day.  That she has been unable to make progress because her brain is a fucking mess.  And all I could think was... "this is one diagnosis I am kind of grateful for."  Do I want my child  to have epilepsy?  Absolutely not.  But this is ONE diagnosis, (of her total of 5) that is actually treatable.  Thank god.  So BRING on the meds.  Lets knock this one out of the park.  Finally.

I have had so many defining moments in my life.  Avery has been a part of most of them.  I had several memories and moments with her in the last 24 hours.  I connect with her on many levels.  She reaches out to me for physical touch, giggles at me, glances at me.  And I know that sweet girl loves me.  My other two sweet girls, Kaylin Joy and Presley Hope are not without their challenges and triumphs.  I am working hard to enjoy all three of my precious daughters every day.  To take a moment, and really live in the present.  To remember gratitude.  To embrace the (however fleeting) precious moments I get to share with my daughters. 

I have so much to be thankful for.  I am trying hard to keep that in mind as we face, yet another, debilitating diagnosis.  So again, THANK YOU.  Thanks for loving us. For reading this.  For keeping us in your thoughts.  It makes it all worth it.  Relationships are what makes the world go around.

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