It might be true, or it might be automatic, but moms of special needs kids hear a lot of apologies.
To be a mom to a special needs baby is a double-edged sword, in one hand, you have a life where everyone treats you like you’re normal. They look at you just like they look at anyone else. They notice your child’s uncontrollable symptoms of a diagnosis they know nothing about, whether that be shaking, wheeling eyes, stims, this or that. Though they notice, they don’t flinch or do a double-take. They don’t stare longer than would be expected, and they don’t wave their hands in front of his face, astonished, asking if he’s fallen asleep sitting up. They comment on his cuteness (which is totally for real), and the adorable way his hair naturally falls into a flow that just happens to be in-style.
And then on the other hand, you have a life where everyone pities you. The forthright pity is not so hard to stomach; the facial contortionist, the “Oh Dear, I Am So Very Sorry,” the “Everything Happens For A Reason, Chin Up.” I conform to this one or that, reassuring a stranger or friendly face, agreeing happily with the ever-positive mantra spewers, as if the desire to paint their sunny faces with some nice black and blue wasn’t making my knuckles twitch. Part of me wants to scream, “NO! There will NEVER be a good enough reason!” While another part of me wants to frown, and disagree, insisting that we don’t have to find a “reason” because we are just like them. Then, there are those that don’t look at me with pity, but him instead; who notice my youth, but don’t dare ask my age, who inspect the bright red File of Life card peeping out from behind his head in his carseat while the lingering unasked question burns holes where their eyes should be, who tell me “You must be doing a great job, for such a young mother,” voicing the exact opposite of their obvious thoughts with a sympathetic glance in his direction and an emphasis on that last bit. I want to scream, “He is fine! We are normal! We are just like everyone else!” And yet, in the same breath, I’d like to whisper, “It’s hard. I worry, I fail, and I fall. Despite my best efforts, I’m not enough,” confirming their unspoken suspicions, while I crumble and break.
Truly, though? It’s the silent pity that cuts me deep. The ones who say the right things, and step in time with their cues. They are always the ones who have this deep pool of saddened sorriness buried in the muscles of their irises that makes me duck my head. Their eyes are but a reflection of my own, unknowingly mirroring the same sorrow embedded so profoundly in the swallows of my heart. It’s enough to make my subconscious run and hide, pull the blankets up and over, not wanting to resurface for days, preferably weeks, until she can shake those grief-stricken eyes from her ever-present memory. It’s these ones that never miss a beat, but I don’t recover from the encounters for days. That life-sucking pity strips me bare, and I feel naked bearing my soul on my sleeve. At least with the others I can replace those feelings with countering, though equally invasive, emotion, dampening the ones I’d rather not face.
To be a mom of a special needs baby is my normal, but it doesn’t make it any easier acknowledging that fact. I am constantly teetering on the edge of an impossibly thin line in every area of my life. I want to be normal, and sometimes I get glimpses of it. Of carefree days when everything goes as planned. Of days filled with hours of playtime that don’t feel so much like forced therapy, of feedings that don’t feel like life or failure-to-thrive situations after I’ve managed to dodge vomiting episodes and choking spells, of diaper weights that don’t make my insides tighten over thoughts of dehydration and hypernatremic episodes, of nap times that don’t make my head swim with urges to check for breath, thoughts of adrenal crises and unconsciousness raging through me. Those days are so cherished, but always tempered with an edge of apprehension and anxiety. The bad days are especially hard when all I want to worry about is when to wean the pacifier, and when to start potty training, and what fruit to try next. It’s difficult when others blow by you, when they pass us in development. It’s joy laced with such an unrelenting woe. Isolation or squashed jealousy? Am I really so heartbroken over another child’s accomplishments? Or is that pit in my stomach just my fear of us never getting there?
Being a special needs mom is a double-edged sword, and it seems no one can get it right, not even me. Am I strong or am I broken? Am I attentive or overbearing? Am I precise or neurotic? Am I controlling or suffocating? Am I happy or am I sad? Am I angry or just exhausted? Do I have faith or am I lost, once again?
I’m reassured constantly, by my family, my friends, my peers, even my professors. But my head spins with uncertainty, seeking some semblance of normalcy and maybe even a little balance might be nice too. A look to the sky is always a glance back in time, to those few hours after he was born, when we thought we were in the clear, when we thought we’d dodged this bullet, when we thought we’d be normal. Because when it gets hard, it’s impossible. And when things get scary, it’s downright frightening, and it leaves a little hole in your being. Though…The Joy. We receive the pity graciously, wondering how to convey the depth of their misunderstanding. Oh, so much they don’t know. To have faced the troubles we’ve seen, standing in the wake of the trails we’ve overcome, we realize those tiny little holes decorating the surfaces of us are a stark reminder of happier times. And when those happy times return, they are so keenly treasured. Most importantly, we realize the holes are not left empty. They are made only to make room for a piece of eternity, a piece of God that He wants you to keep. We don’t see it in the midst of the storms, but to take a part of you away, only to fill it with something greater is well worth the pain of its removal. Because “the most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of those depths. These people have an appreciation, a sensitivity, an understanding of life that fills them with compassion, gentleness, and a deep loving concern.. Beautiful people do not just happen.”