What we didn't know then

You may have noticed that my writing has fallen off here. Quite a bit. Yeah, I know, I know. I don’t need to beat myself up about it, it’s my blog, blah, blah, blah.  The truth is, I haven’t been writing because I haven’t known how—or what—to share about the changes happening with my son. The words are jammed up inside my head, warring with the feelings inside my heart. I have discarded multiple drafts in an effort to find the words I need. I wrestle with what I want to say and how much I feel comfortable sharing. I still don’t have the answer; I am outside my comfort zone.

The irony is not lost on me.  Ever the consummate over-sharer— not afraid to tell my story to anyone who will listen, I have struggled with what to reveal. I’ve been grappling with finding my own truth and having to confront my own biases all while trying to find a new equilibrium. I have been forced to examine and to reframe my vision for the life I thought we would have.

The life I thought he would have.

It’s very much a work in progress as we continue to redefine, reshape and work our way through the morass of emotions and information.

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When my son was born extremely prematurely, he was substantially smaller than his gestational age and had a number of identifiable health conditions in need of immediate treatment –either with medications or surgeries. Life—mine and his—became about surviving another day, making it through another crisis.

Over the course of his 209-day hospital stay, and even after he came home, the focus was on making it through; through another season, another health crisis—whatever curve-ball life threw our way.  At that point in time, there was no way to predict how the cards would fall and no way of knowing what his future might hold.  Many professionals told us there were still so few children like ours who were old enough to really have enough data to be able to predict with any degree of certainty. So, we simply hunkered down and did the best we knew how to do with the minimum of supports we had. All we knew was that we were not quite out of the woods but not quite fully in them.

“When we let go of hope fear wins.”

Through the years, there have been so many well-intentioned people –from health care professionals to total strangers—who confidently told us not to worry, our son would surely catch up. They patted our shoulders in sympathetic displays and told us stories of their cousin’s friend’s uncle’s daughter or their neighbor’s son who were “born early, too; they caught up by the time they were in elementary school.”

When you don’t know what you don’t know and the prospect of knowing certain things is, well, scary, it’s all too easy to want to believe the well-wishers and the miracle-sellers who predict your child’s miraculous growth and feats of development. So, you put on the blinders and tuck your chin down and simply soldier on—hoping for and working toward the best, whatever that turns out to be. In the absence of even a hint at the longer view, we simply clung to hope and pushed our worries aside, taking it a day at a time, an issue at a time.

When our son was ultimately diagnosed with PDD-NOS, it gave us something to hold on to and provided a new context through which to view everything else. As time progressed and some of the more emergent health issues began to resolve or remained stable, we hit a kind of developmental sweet-spot.  Our son began to make tremendous progress and was rapidly gaining many skills which had been so severely delayed. In a seemingly short time, he blossomed from the child who couldn’t even sit up or roll over and who relied on a tube for all his nutrition, to a child who could walk and run, climb and eat, and who had taught himself letters and was showing signs of spelling and early reading skills emerging.

With that swelling surge of hope, we began to really push for supports and look for signs of academic progress.  Some early literacy skills were emerging, multiple word sentences constructed on his speech device – there were glimpses; glimmers of dazzling progress.

Until there weren’t.

Which is where we have been for a while now. I’ve struggled to understand for myself and to try to articulate for others, the degree to which things have stagnated; there’s been some significant regression in some areas. It’s best summed up in a brief conversation I had with our developmental pediatrician this week.

ME: So, if I have three different evaluations, done by two different entities over a two-and-a-half year period – and not shared between each other—and they all show pretty much the same thing, including almost no change over time…

Can I pretty much assume that (1) my son doesn’t test well and the tests aren’t completely accurate and (2) that there’s probably *some* kernel of accuracy there which speaks to a larger issue? The one we think we are seeing?

DR: (wrinkling her nose in a sympathetic grimace, nods her head) Yeah, I would make that leap. Let’s make an appointment to talk about it and find a new way forward.

Hope is important; it is vital. But so is the ability to see beyond the heart’s desires, to peel back the thin veil over your fears and really look at what is in front of you. I’ve been in that process for a while now –none of this is new data; it’s just data my husband and I have finally been ready to see in a different light.  The process of getting to this point has been emotionally messy. It’s been painful to confront our own prejudices.

For years we have both felt like we were sort of straddling two different disability worlds and not feeling like we solidly belonged in either one. Was our inability to settle in, to identify with any one group, born of denial and shame? Why is it so much easier for me to say, publicly, that my child has “mild cerebral palsy and autism” yet I cannot bring myself to declare just as casually that he is intellectually disabled—mentally retarded?  (Yes, I know the term really isn’t used anymore; that’s my point—I’m calling myself out on my own biases and misperceptions.)

Different words will not change my beautiful, smart, funny, loving child. Nothing will.  And yet, the truth of those same words cuts me to the bone, laying bare the fears and grief I’ve held at bay for most of my son’s life; I am the one it changes. I am the one those words challenge.

I hope I am able to meet it with half the grace, determination and heart with which my son has lived his entire life.

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