Avery Grace

Avery Grace

Saturday, February 21, 2009

The journey

When you have a newborn baby, you are "broken in" to parenthood pretty quick. Gradually, they are awake more often and their needs become more complicated, but initially, when they first arrive... they are simple, pure, sleepy, hungry and cuddly. It is the beginning of a lifelong journey that twists and turns in ways you never expected, and that brings forth absolute joy, and vulnerability beyond anything ever experienced before. If you thought you knew of unconditional love before, now you are given a whole new definition. If you thought you knew fear, now you comprehend consternation.

I liken my journey into having a child with special needs to that of becoming a new parent without a clue.... though I had a clue, just not a clear and present, in my face kind of realization I have now. It started off easy... so she may just be a late talker. Her dad didn't utter word until he was 2, maybe she's just a bit delayed. After all, she was still social and funny, sweet and endearing. Then we thought maybe she stopped talking and pointing as much because she had been sick, and was mastering walking. That must be it. Then the dwindling eye contact, then the distant staring... and so on. Once we started seeking out answers, even the doctors were conjectural. Her therapists would go back and forth. She was still holding on to some skills she would only later lose. It was all so bewildering.

So after a while, some thought she may be "mildly" on the Autism spectrum. Surely she would make progress and work through these difficulties. Several specialists wouldn't even categorize her at all... until she hit 2. Second and third visits to the same specialists yielded new doubts, and gradually brought us even deeper into the diagnosis. No longer using words like "mild" or "maybe." Now in addition to Apraxia and Mastocytosis... we were hearing Autism.

I have heard some parents compare this type of journey to that of losing a child altogether... and though I wouldn't go that far, I would say it is close. So then came the panic. The utter confusion as of what to do next. Once settled in various therapies and biomedical treatments, the depression sinks in... and you are left to agonize over making the right decisions, fighting the system, warding off stares, and explaining away differences.

After some time, and I imagine that how much time differs from person to person, acceptance and gratitude begin to come into play. Do I still worry about Avery every minute of the day... absolutely. And do I still wonder how she could ever manage without me... every second. But at least now I feel like I can breathe again. Maybe next year I will relearn how to sleep.

But don't get me wrong. I am no expert in this field yet. We are still at the beginning of this journey, and we don't have a clue how the book is going to unfold. But I will tell you this... like any new parent... I am growing accustomed. I am learning how to love my sweet girls just as they are. I am gaining strength with every step, and I am preparing to live out my long life working to better the circumstances for my family and those like us.

A roller coaster can't begin to do justice to describing what the past 2 years have been like for us, but the ride is getting more bearable... and somehow, we are finding joy, abundance, and humility within the experience.

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