“They told us he would never walk, but we never gave up on him. Now he’s running.”
“The doctors all said she would probably never speak, but we just wouldn’t accept that. We never stopped believing in her. Now we can’t shut her up!”
It sounds beautiful. If you’re a parent who has spoken those words, it may feel nothing short of miraculous. Or maybe not miraculous, but the result of hours of therapy, endless research, always fighting for education and services that will make the difference, that will prove “them” wrong.
I know you don’t do it for that reason; it’s not about proving them wrong. You do it because this is your CHILD we are talking about, and you love and care for him the way parents are supposed to love and care for their children. You make the appointments and schedule the therapies, and you come to accept the “special needs” that no longer feel so special–they just feel like life. It’s a complicated life, exhausting and sometimes isolating–as if an invisible wall exists between you and parents of typical children, a wall you likely built yourself.
I wonder if you were like me in the early days, if your world was shattered when you received the news–your visions of a perfect baby abruptly replaced with fear and uncertainty. Maybe you found yourself in a dark place, at the bottom of a pit, railing against a universe turned upside down, a God who felt unjust.
Maybe you’re like me and you grieved what felt like a death, mourning a baby who lived only in your imagination but who felt very real. Maybe it brought you to your knees, the enormity of it all, because you knew this child would change everything. And as the information mounted, as “they” told you more about what your child would not–could not–do, maybe you wanted to run away and leave it all behind, make it disappear.
And yet, though you were crushed and frightened, desperately wishing for things to be different, there was never any question about your undying love for this child. In fact, the fear and desire for escape, they may have yielded a fierce protectiveness only a parent of a child with a disability can know. Because if you, who would walk through fire for him, who loves him so intensely your chest aches with emotion–if you could have trouble accepting his disability, what could you expect from a harsh and cruel world?
It’s a horrible thought–that your child could feel rejected, unloved, alone.
I must acknowledge that not everyone struggles with grief and fear when it comes to having a child with a disability. Maybe you’re one of those people who faced it head-on, unafraid, ready and willing to tackle the role of special needs parent.
I did not handle it with such grace, not in the beginning. I was sad and bitter, resentful of other women and their “perfect” babies. I wanted–and still want–an easier life for my son. Maybe, I thought to myself in the beginning, with the right therapy, the earliest of interventions, maybe we could be like those families who “never gave up” and all the predictions. I just had to believe in him, I told myself, that he could beat the odds and, I don’t know, outwit his own genes?
I think now about the Betsy of eight years ago–a brand new mother, so anxious about a baby whose future could not be predicted, and how heavy the weight of it all felt on my shoulders. What if I were the wrong kind of mother for him? What if I didn’t work with him enough?What if I failed? Well, I did fail, and I continue to fail all the time. Sometimes daily.
But you know what? It’s been fine. In fact, it’s been better than fine. It’s hard, yes, and exhausting. I rarely get a break, and I go days without washing my hair. But it’s familiar to me, this life with my son and his three younger siblings, and I find myself unable to imagine it any differently without feeling like I were missing out on something wonderful.
My Scott is a gift I never knew I wanted, that I didn’t realize I so desperately needed. I have always and will always believe in him, and I will never, ever give up on him.
But no matter how strongly I refuse to give up, nor how fervent my belief and confidence in Scott’s abilities, he will always have his cognitive disability.
Some children will never see. Some will never hear. Some will never walk, or speak. Not because their parents laid down and accepted it, not because they lacked people who believed in them, and certainly not because their families gave up on them.
Sometimes things are the way they are just because that’s the way they are. Or as my 4-year-old would remind me, “We’ll have to ask God about that when we get to Heaven.”
(Betsy Swenson can be reached at firstname.lastname@example.org.)