Parents of children with special needs don’t want pity. We’re perfectly okay, perfectly happy, perfectly in love with the little ones God gave us. We wouldn’t trade them for anything, and they are a blessing in every sense. But at the same time, we’re completely not okay. Our babies suffer, we suffer, and this is really hard.
I have never been easily embarrassed. I’m not easily offended, thanks to my New York mother and grandmother. Despite being an open, non-private person who will gladly share with you about my life, however, I’ve never been vulnerable with people before getting to know them well. Vulnerability was always a choice that I had control over.
But having an obviously special needs child (our Amelia has Down syndrome) opens a chasm of vulnerability that is difficult to explain. I no longer get to choose when/with whom I will be vulnerable. I am open to being hurt All The Time. I can’t escape it. My heart is permanently beating outside of my chest, in the body of a little girl who has a condition that causes 90% of mothers to decide she isn’t even worthy of life. This Vulnerability has been the single biggest adjustment to life with a special needs child.
I keep hoping that this vulnerability will end, that I will find new ways of steeling my soul. I imagine that a similar vulnerability creeps into all sorts of trials: un-asked-for vulnerability is part of what makes Cancer hard, part of why Divorce feels unbearable. Though I haven’t experienced either of those, I’m sure they each have their unique thistles that make the vulnerability challenging.
What’s exceptional about the trial of having a special needs child is that your trial has come to you in the form of a person. The thing that makes my life more challenging is the same thing that makes Amelia who she is. There is no separating Down syndrome from my daughter.
When I take Amelia someplace new, the chasm of vulnerability is flooded with fear. Who will notice her delays? Her g-tube? What will they say? Who will treat her differently? People have mostly been gracious, but it doesn’t change the fact that at any moment someone could knock me over with one little feather of a comment about Amelia.
Even when people are trying to be helpful, the pain is always at the surface, easily pressed down into my soul. One well-meaning couple saw our hands full at church one Sunday and tried to encourage us with how wonderfully empty and free our nest will be one day. A nurse bubbled with enthusiasm about how elementary-aged kids can hook up their own g-tubes (I was imagining my baby outgrowing her g-tube within months, not years). My friend’s 10-month-old foster daughter crawled and talked circles around my 12-month-old.
Like other things in life, this is not one-dimensional. This unintentional vulnerability does have value. I can feel my heart expanding, even as each experience of pain carves out room for deeper joy, deeper understanding.
Perhaps it’s true, as Chesterton says, that “We do not want joy and anger to neutralize each other and produce a surly contentment; we want a fiercer delight and a fiercer discontent” (Heretics and Orthodoxy, p. 228).
My experiences with a baby in heart failure and with continuing medical needs has definitely created a fiercer discontent with the world as it is. But I am grateful for that discontent because it is also producing a fiercer delight: in every smile, in every new connection, and in the Father whose mercies are new every morning.