Saturday, January 14, 2012
Sometimes I get a kick in the stomach just when I need it. No, not the literal kick I get daily when drying off my flappy, stimmy, silly Avery after her shower that overstimulates her central nervous system and sends it into a frenzy.... I mean a metaphorical kick... one that reminds me to snap back to reality when I've taken a "sad" or "envy" moment. A kick that signals me to get a grip, march onward, and put my big girl panties on. Today I felt one of those kicks.
Some of you have heard this story before, but its worth repeating. Back in the "dark days" (when Avery started regressing and her autoimmune disorder was spiking) I was panicked that she would never talk. (4 years later I'm a little calmer about that likely outcome) I was freaking out about the dreaded "A" word, and couldn't begin to understand why I was "losing" my once connected, babbling baby to a disorder that I was all too familiar with. I remember clearly when she stopped responding to her name. I found myself screaming her name right beside her, tears running down my face as she stared off into space. I'm pretty sure I could have been on fire and she wouldn't have noticed me. Anyway, I digress. But you get the point. It was a time I was full of anxiety, fear, sadness and despair. Then I got a phone call from one of her doctors that brought me to my knees. A metaphorical "kick" to the stomach. "This could be more serious than we thought. We are pretty certain she has Systemic Mastocytosis, and some of her bloodwork indicates that she could have Mast Cell Leukemia." Are. You. Fucking. Kidding. Me? Was all I could think. And so began my affair with Google.
I remember that night so clearly. I was rocking my always sleepless baby in my arms, trying to pinpoint where this all went wrong. Was is something I did when I was pregnant? Where genetics somehow to blame? (even though no one has Autism or mastocytosis) Did vaccinations assualt her already weak immune system and send her brain and body into an inflammatory mess? Did the 18 rounds of antibiotics for her constant strep and ear infections somehow destroy her immune system? And most importantly... What could I have done differently? And, What can be done NOW?
It was several days before we had results back from the oncologist that told us that she DID NOT have Leukemia at that time. I remember being so grateful. And saying OUT LOUD that I didn't care if she never spoke a word, or looked at me ever again... that I just loved her, and wanted her here, and that her life would have meaning. No matter what was ahead of us.
It was a BIG kick in the stomach. And in some ways I am glad I had it. I needed to know that I was going to be ok with Autism. And most of the time I am. But lately, I've been a little bit bummed. Bummed at lack of progress. Bummed that my kid seems to have the MOST severe kind of Autism. Bummed that she still can't use a toilet or even pull down her own pants. Still can't talk at all. Not even a word. Bummed at the tens of thousands of dollars spent on therapy... though I would give her my very last penny as long as there is an inkling of hope that it will benefit her. Bummed at the flare up in Masto, bummed at the side effects of her meds. Just bummed.
But today I came across two circumstances that kicked me back to gratitude. First, I read a blog of a woman who is days away from losing her beloved baby boy (age 2) to a horrible disease. Second, I picked up and read the obituary we saved of a dear friend of ours who passed away from cancer in November who left behind her loving husband, parents and two precious daughters, ages 1 and 3. Susie often commented on my blog posts and was a fighter until her last day.
It seems totally screwed up that these tragic and horrible circumstances make me feel so lucky. It also makes me feel like a big jackass. Each day with my girls, no matter how chaotic, is a GIFT. I control very little in my life, and certainly feel entitled to have a few bitchy days and feel a bit short changed from time to time.... but at least I get to BE HERE. And Avery, despite her MANY challenges, is also HERE and walking and breathing. I would give my life in a moment if it meant that Avery could be healed... but it doesn't work that way. So for today, I march on. I choose to lift off the "bummed out" veil and get a grip.
Autism, Apraxia, Mastocytosis... they all LITERALLY kick me down from time to time. I'm not saying that it's ever going to be easy. But being Avery's mom, whether I like it or not, is defining me. For a little girl with no words... she sure does inspire a lot of them from me. I can't imagine life without her. Words or not, she is making her mark, and if I have anything to do with it... she will be heard.