Tuesday, January 26, 2016

800 Recycled Milk Jugs

Can I share something with you? Something I've been in denial about for a long time. Something that makes my heart physically ache. Something I can only type at this point because the words still catch in my throat.

I have a disabled child.

Since she was 4 years old we've worked with doctors, diagnosticians, therapists and psychiatrists to better understand the many facets of my daughter's delays and challenges. For some reason it took her turning 9 years old for me to really grasp what charts and labels and testing have plainly declared for years. Although I've watched an ever-widening crevasse separate her from typical peers, I've gone to extraordinary lengths to deny the truth.  

"This is just a rough month."

"I need to try a new approach."  
"We need to be more consistent."
"She is capable."

I told myself all of these things and more. Even the heavy weight of guilt I heaped on my shoulders felt better than swallowing the truth. At the end of one particularly long and frustrating day a few months ago I decided to burn off some of my irritation with a long run by re-researching parenting tips for coping with her most prominent diagnosis. I visited several reputable forums and websites, but one sentence at the very bottom of a lengthy article reached out and slapped me in the face: 

"Adults with this disability are often able to...."

Adults. Disability. This thing. This issue. This affliction. This damage. It's here for good. It is part of who she is. She is a disabled child who will be a disabled adult. For the first time I was able to wrap my mind around this fact. 
But swallowing this bitter pill, accepting this truth... it's not a one time event. It's not something we muscle through, then feel relief afterwards. It's a pill I swallow every day again. C.S. Lewis sums it up well in A Grief Observed:

“For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round...  How often -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 

I am proud of my daughter for a thousand and one reasons. We have a close, loving relationship. She's as tough as nails and scrappy. A fighter and a lover. God willing she will live a long, fulfilling life. Our daughter knows she is different... but doesn't yet, and may never, fully understand what that means. She doesn't know that this hardness has a name. I can't begin to write about her struggle with this, as I am just beginning to explore my own. And maybe that is her story to tell not mine. Sometimes an entire day goes by I am unaware of her disability. And then the realization of it yanks the rug from under me as suddenly and devastatingly as the first time. Some days the management of her disability is so present and suffocating it absorbs every moment of the day. The same leg is cut off time after time. 

Our lives aren't ruined. She is fearfully and wonderfully made. I don't harbor a shred of regret. Not that she's mine and not for the years I have poured my misguided self into trying to make this thing disability un-true. This disability. My fingers still betray me. As though typing the word makes it more real. But I'm making progress. And she is too. I hope this post will bring comfort to other moms who are grappling with similar grief and realizations. I hope it helps our family and friends and teachers and neighbors understand how we can talk frankly about our child's challenges in one breath then burst into tears the next. I want to recycle this grief and turn it into power and inspiration and hope. Like one of those park benches made out of milk jugs. I want to find freedom in calling this by it's name. I think that helps me own it. I hope it helps her own it too.

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