Archive for December, 2009
Saturday, I had one of the moments all parents, and especially parents of special kids, dread the most. I watched my parents drive C away in one direction while Husband drove me away in another, and I wondered if it was the last time I would ever see that little face. Trying not to think about how he could survive without me if the worst happened, I blew C a million kisses as Husband drove me to the emergency room to find out what was wrong with my heart.
My heart is broken, you see. I wasn’t sure in exactly what way at the time, but I know now. This won’t kill me now or later if managed well, but it will change my life in some as yet unknown amount. Even after four days in the hospital, I still don’t have all the answers. I never will. It’s the same with C. Not one of the specialists I saw could tell me why my heart has gone and done what it has done any more than anyone can tell me why C has autism. It could be genetic, it could be previous damage, it could be something else altogether. Why a 40-year-old woman who has absolutely zero risk factors now has a disorder/disease/condition most often seen in men well over 60 seems to be beyond the expertise of the various experts who came to visit with me while I sat in my hospital bed doing my best not to cry. And I often failed at that task.
Now, just a couple of days before Christmas, I am gratefully and happily home at last, back in my own bed surrounded by my favorite boys – Husband, C and Dog. And while I continue to marvel at how C’s path in life seems so echoed in my own, I am reminded of and old saying that seems particularly apt here. Simply put: “The heart knows no reason.”
I worked on a research paper with my favorite professor in college. Part of our hypothesis was that behavior doesn’t change language. After showing that no matter how integrated Spanish-speaking people became in American culture, their ties to their native language did not change, I became a believer in the idea that language changes behavior as opposed to the other way around. While I wouldn’t go as far as saying the book The Secret is truth and gospel, I do believe there is much power in the thoughts and words we chose to believe and use.
That probably explains my attempts to constantly see the upside for everything going on in our lives. Husband getting downsized last spring? The initial freak-out was replaced by the thought that it was an opportunity for him to find the perfect job, since the other one was clearly not. C getting picked on at school? He will grow up to be a much more sensitive person. My own health going off the deep end? It’s an opportunity to really change the course of how I will feel in 20 years and take stock in both my physical and emotional well-being.
However, to be totally honest, there are huge gaps of simple, utter frustration and stress. While I think we’ve certainly accepted what is with C and actually take quite a bit of joy in the things his diagnosis brings both him and us, it does take its toll. Some days, within 15 minutes of his being home from school I’m ready to jump out the proverbial window, despite living in a one-story house. I wonder if I have the patience or stamina to give this child what he needs, because I often think what he needs is so much bigger than what I can give him. And sometimes that frankly just sucks. Raising a child with a diagnosis is hard, and it’s a lot of work. It takes its toll on me as a parent, and no matter how much I love C just the way he is, I can’t stop the gray hair from coming, my heart from being weary, and my head from sometimes craving an escape to somewhere, anywhere, but here.
When I was in high school, I felt constantly on the outs. If we had been in the game of Survivor, I surely would’ve been voted off the island. Truly, my whole life I’ve never really felt as though I fit in anywhere, which astounds my mother, the goddess of all things social. My different-ness then came not from a diagnosis like C’s, but rather from not being a party girl coupled with wanting to move on to bigger and better things from the what-was-then-but is-not-now cow-town in which I grew up.
My different-ness now, however, is one in which I revel. I love being Mom to a special needs kid – I feel as though I’m part of a wonderful club of awesome (if slightly zombie-like) parents. Since I have been writing this blog (almost two years now), friends both new and old have come out of the woodwork sharing stories of their own children with challenges and gifts all their own.
As I look through the faces of friends on Facebook, I think back to those high school days and know that none of us ever thought we would be those catatonic parents trying to help their very special kids gain a foothold in this complicated world. I don’t even remember there being very special kids in high school, although I’m sure they were around. Yet now they seem to be everywhere, touching friends’ lives in profound ways most people can’t even imagine.
So instead of voting people off the island, I think I’d invite everyone to join me on it. Let’s create a special place where all of our amazing kids can grow and develop at their own pace, run free without aid, and where they always, always, fit in.
I’m pretty sure all the things I swore as a child that I would never say to my own children have come out of my mouth in the last four hours. From, “Because I said so,” to “Mommy and Daddy make the rules, not you,” I have broken all those childhood promises to myself in a very short amount of time. Geologically speaking, anyway, because the last four hours felt like an eon or twelve.
Yet like all good dysfunctions, I’m pretty sure I can blame this one on my mother. The price we pay, and it is the absolutely only price we pay, for having C spend a night at Ga and Pa’s house, is a complete hellion when we get home – to the point where Husband laughingly asked me to call Ga this evening and ask why she took all of C’s good behavior.
It never fails; we pick up C from “Grandma camp,” as we call it, and get the report that it was all sweetness and light. After all, it always is when C is with someone other than us, which leaves us no conclusion to which we can arrive except that we are exceptionally bad parents. Well, that’s the conclusion at which I arrive; Husband is far smarter than I. He knows, and fully believes, that a) C saves his worst behavior for the ones he loves the most; or b) that C works really hard to hold it together at school, for example, and then has to unload when he comes home, or c) C dumps on us because he subconsciously he knows he can and that we will still love him after it’s over.
It’s not as if he gets away with anything at Ga and Pa’s house – far from it. The kicker is that he doesn’t really even try to get away with anything at their house. Or school, for that matter. The Dr. Phil in me says that we are doing something wrong at home that sends C the message that it is okay to test each and every boundary as many times as possible in a single hour. But I think I’ll go with Husband on this one and choose option “a.”
I have a confession to make: I was ambivalent at best about becoming a mother. Husband and I never really planned to have children, nor did we plan not to have children. There was no conscious decision made in either direction. I was certainly excited when I found out I was pregnant, although more than anything else, I was absolutely terrified. Of what, exactly, I’m not sure.
I was not one of those women who enjoyed being pregnant. I was surrounded by those women, and marveled at their eagerness in experiencing all things pregnancy. But they may as well have been from another planet for all I could relate to them. I’m just not cut of that cloth. Even more so, I wasn’t one of those women who wanted with all their being, knew from the moment they could think for themselves, that they wanted to be mothers. I almost felt guilty that I was going to become a mother while I watched dear friends, who so desperately wanted to become mothers, try everything possible to get pregnant but couldn’t.
Yet for all my feelings of ambivalence, I became one of those mothers who simply cannot separate themselves from their child. I’ve struggled with it since day one. Not because I simply revel in all things parenting – I didn’t coo at every spit up or eagerly journal and videotape every single thing C has done. But when I look at C, and marvel at how he’s of me (and sometimes almost can’t comprehend how he could be), I am struck by how very un-separate from me he seems to be. Some would say it’s my heart living outside my body, but it only feels like that a little bit. When I really try to get my thoughts around it, I can’t exactly.
It takes me back to the very beginning of my blog (see here), nearly two years ago now. While I do believe that God gives us what we need, I’m still on the watch for the greater meaning of why this child has me and I him. Perhaps it is as simple, and as complex, as C is what I need and I am what C needs, no further explanation necessary.