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Blissfully Unaware

Do you have a child who is blissfully unaware of their disabilities?

I have a child who is completely and utterly blissfully unaware of how different she is from the rest of her typical peers. I say that not because she doesn't know - she knows that she is different. But most of the time her sunny disposition and willingness to try, outweigh the things that she can't do.

In fact, I am so grateful that she is unaware. Yes, that brings a whole bunch of other issues (like teaching her how to say no, how to set boundaries, and have her own agency in situations she might be uncomfortable in) but I am so grateful that her optimism outweighs her struggles.

She was one day from turning 5 the day we found out her official diagnosis: intellectual disability. It wouldn't be for another year that we would discover the cause (genetic shaft abnormality). Immediately following the diagnosis, we couldn’t articulate what it meant, and I don’t think in the years following much has changed in our ability to say what the diagnosis means. We didn’t expect that diagnosis. My husband once described his own feelings following her diagnosis: “It was like being hit by lightning and a tidal wave all at once.”

"Somehow the diagnosis of ID seemed crueler, more pejorative, especially when we are forced to utilize the former diagnostic word (the 'r' word)."

Somehow the diagnosis of ID seems crueler, more pejorative, especially when we are forced to utilize the former diagnostic word (the "r" word). I found myself talking around in circles around the old word because people were as confused as I was about the diagnostic language of "Intellectual Disability." When I have been forced to finally say the pejorative word, I find myself hissing it – as if my disdain for that word is shown by my whispering it in a hiss.

To make matters worse, I often feel guilty for needing to explain her disability. She is in practically perfect health. She is not medically fragile. So many other parents have to struggle with life and death decisions on behalf of the child – choices that we do not have to make. And while she has had some issues with anxiety-induced absence seizures, she is a picture of health. Her disabilities are cognitive.

I find that there have been bright spots, where I forget her diagnosis, and she appears a happy kid, chatting about her favorite books, dancing and singing in front of her mirror, or greeting a friend or teacher with an all-encompassing hug. Being her mom is rewarding, excruciatingly heart-wrenching, thrilling, exhausting, blissful, and love expanding. Every day I learn something new about her and myself.

But I also see everything that represents the daily stress and struggles of a kid with ID: the outfit she wears because things that don't slip on with comfort cause meltdowns (and not the pleasant sucking thumb "meltdowns" of days gone by); a fire alarm or bug will set off her anxiety causing her to hyper-focus on that incident for days; the swings she swings in during playground time so she doesn't have to engage or follow directions in a game the other kids were playing (because directions and rules are hard to follow); the concrete and unbending nature of her mind (her record goes on repeat several times a day); her inability to do anything school-related without direct direction from an adult (don't get me started on pandemic home-schooling)... the list could go on and on.

In my mind, I know that the diagnosis defines only her condition, not who she is and her place in the world. But I still get overwhelmed knowing that we will always have to be her advocate. I'm baffled by these feelings of grief, resentment, disappointment, and frustration. I love my daughter. She is beautiful, hilarious, caring, loveable, huggable, and the light of my life. Like all children (and heck, adults too), she is still being molded and shaped into who she will become and what part she will play in the world. She has made so many milestones since her diagnosis. But when the struggle bus rolls in, those milestones feel a million miles away. It hits me in a brutal way. And my heart breaks in pieces.

The truth is that our daughter is perfect just the way she is. She will always be ready with a quippy conversation starter, to light up the world around her with her bright smile, melt people's hearts with her piercing eyes, make you laugh with her goofy jokes and spontaneity, and catch you off guard with her hug at just the right time. She navigates this strange world we live in only because of the wonderful support we have from her beloved community. She does it the only way she knows how: with love and the light of a much-loved child of God. And because she walks a broken road, her Dad, Brother, and I do too. It's not one any of us have chosen, but one that makes all the difference in the world when we walk it together.


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