Don’t Call Us Special
My daughter Gemma will be two years old by the time you read this. Every inch of her is filled with that classic toddler cuteness, with perfect round cheeks, deep soulful eyes, and a delicate little nose. She finally has enough hair for two little ponytails that stick straight out from her head and curl over, forming one perfect ringlet each. She looks like me and like her brother at the same time. And she has our moods too, smiling uncontrollably at funny jokes and silly noises and wailing with deep sadness at minor inconveniences, like when she drops her favorite toy.
I like writing about her like this, because it makes her sound so normal, like every description of a two year old ever recorded. Cute and round, like most toddlers are, but otherwise perfectly mundane. Not special. Dear God, not special or unique or worst of all, inspirational.
You might be lost right now, so here’s some context:
My daughter has a genetic neurodegenerative disease. Energy deficiencies, global developmental delay, seizures, and an under-developed brain are just a few of the symptoms. She needs a toddler-sized wheelchair to help her move around. She has therapy twice a week to help her develop alternate communication skills, since she doesn’t have the ability to form words yet. She has other therapy sessions too, to learn to use her hands and to strengthen her muscles. She still receives most of her nutrition from a formula mix propped up in her Boppy pillow, because she can’t hold her bottles or otherwise feed herself. She’s never had a lick of a popsicle or a taste of juice or even a bite of strawberry, not because I don’t want her to have treats, but because her genetic disease is managed by a ketogenic diet requiring her to eat mostly butter and cream for all of her solid food meals.
When I gave birth to my first child, a sweet, neurotypical and non-disabled son, I dreamed that he might be exceptional. He already is, at least to me. But for my daughter? I just wish for all of us to see her in all the ways she is perfectly normal, not for her “specialness.”
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I am routinely asked, as delicately as a fellow mom at the park can muster, “Why does she have that chair?”
I know they really want to ask “What’s wrong with her?”, but it’s 2020, and most of us understand that’s not appropriate to say out loud anymore. Still, the curiosity persists.
I mutter, “She has special needs,” not because I like the description, but because I know its shorthand for a person with disabilities, and I don’t have the energy to get any more specific.
I don’t just dislike that description; I hate it. Special implies something positive, something that everyone wants to have and to see. But Gemma’s disease is not special. It’s rare, but it isn’t a gift or a prize. It will take her from me long before I am ready. It will cause her pain and will confuse her mind. It will make her tired, so so tired. It does not feel special.
It feels like avoidance too. A way for those unfamiliar to my daughter to brush off their discomfort about being in the presence of a child with disabilities. A way to ignore the fear that they too might have a child whose life is destined to turn out exactly the opposite of how they imagined. They have been faced with a reckoning in the form of this cute, sweet, and significantly disabled child. She is loved and cared for by her family and a large team of medical professionals, from the nurses who assist me with her care daily to the doctors who study and monitor the progression of her disease. But she is also broken in a way. Not “functional.” Not “useful” in any economic sense. Not societally “valuable” in the way we’ve been taught to think about it. But you can’t say that about a baby, and it’s hard to confront the fact that we’ve been conditioned with a worldview in which disabled humans can’t be as valuable as other humans. So, they call my daughter special instead. I understand the impulse and the history, and yet I still cringe internally every time.
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“She came to you for a reason: a special child for special parents,” I hear on a monthly basis (if not more often).
But I am not a special parent. I’m not even an exceptionally good parent. I am not patient. I am not selfless. I am not calm and grounded.
I’m a ball of anxiety. I make decisions out of fear when I’m capable of making them at all. I argue with doctors, sometimes out of genuine concern and advocacy for my daughter. Other times, because I am just angry at the world, and they happen to be in the room. I am frustrated and short-tempered and exhausted.
I wish I were special. Maybe I’d have the skills to contribute more research to her disease. Maybe I’d be able to better discern between the constant stream of medical interventions offered to us. Maybe I’d be able to accept the inevitability of our situation.
Behind every “special,” the implication is that it’s special for ME to do this. No one else could do it, and I chose to take on this life. That makes me special. Different.
It’s another diversion. They desperately need me to be special because that means this life could only happen to me. They bypass the reality that because I am not special, they could have my life. We are separated by chance, not design.
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I take solace in not being special. I look for all the non-special moments in our life now. I don’t want to feel special or be labeled “special.”
I watch my two children, my son, who hit every milestone a four year old should have, and my daughter, lacking all the skills of a non-disabled two year old, snuggle on the couch while watching Monster’s Inc for the hundredth time.
I stare into my daughter’s eyes, her face lighting up the way every child’s does when looking at their mother, and sing her favorite nursery rhymes as a thousand generations of mothers before me have done.
I show my children the freshly fallen snow, bundling them up to feel the crisp air and to taste the icy snowflakes like I did as a child.
I squeeze them both closely, finally understanding the poems of motherhood; women writing about how their hearts now lived outside their bodies, in little beings who we try to protect, preparing them to live on without us eventually.
These moments feel special and universal all at once. I relish them. They are special in a way that I don’t have explain. They don’t need caveats or euphemisms. They are moments that feel unique to my children but are understood by humans all over the world. This is the only realm in which I want to use the word “special.”
ALYSSA NUTILE is an artist, writer, mother of two, and advocate living on the shores of Lake Erie in Erie, Pennsylvania. Her daughter Gemma has a debilitating genetic disease, and Alyssa’s work focuses on the emotional, mental, and physical realities of loving, parenting, and advocating for a medically complex child. She’s currently writing a graphic memoir about her pregnancy and first year of life with Gemma. You can see more of her writing and artwork at AlyssaNutile.com and follow our daily life on Instagram @alyssanewt.
