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As a mother of a child who has a disability, I’ve heard and seen things that just absolutely break my heart.
Just today I saw an article discussing the symptoms of caregiver abuse, stemming from a care giver neglecting a young man with Down Syndrome. The young man died because his caregiver took drugs and fell asleep, forgot about him, and he died in the hot car.
Absolutely gut wrenching.
“They have it so much worse…”
I’m not sure why this one sentence is affecting me so much tonight, but I just wanted to get this off my chest.
If you have been following our journey with Jaxson, you would know that he has been diagnosed with a rare genetic disorder: Dyrk1a Syndrome. But, if you’re new to my blog, you can read more about our story here.
They Have it So Much Worse
Who would’ve thought these six words, this sentence, would have such an effect on me – and I’m sure others as well?
You’re probably thinking, “well they’re right, it’s not that bad. It could be worse.”
But those words, that sentence, upsets me because it is as if they’re belittling our child, our story, like it’s nothing compared to another family’s journey. It is as if they are negating our struggles with getting him to gain weight, the endless hours of therapies, the many hours of driving to specialty doctors…
They’re pretty much saying our child with a disability’s symptoms and features aren’t as bad as others and that we shouldn’t “complain”.
This is Why We Need a Tribe
This circles back to my recent post, 5 Reasons We Need a Special Needs Tribe, and why they’re so important. No matter the circumstances, the features, the symptoms… they don’t judge. They know that no matter the symptoms, the journey, that we are going through the same damn thing.
We all have that nagging fear of what will happen to our children when we are not here anymore.
We all have the stress and the isolation of caring for a child with a disability.
The uncertainty of the future.
Whether we have a place to change our adult children’s diaper.
If we are going to be judged for using the handicap spot because our child doesn’t look disabled.
WE ALL KNOW. No matter the level of need, we understand. It’s not a pissing contest, so we should stop comparing! Stop telling us It Could Be Worse.
My One Request to You
If you’re a mother, father, sibling, or even a friend of a typical individual, I want to leave you with this. If you have a friend or a loved one caring for a child with different needs, listen to them. You may not understand what they’re going through, but don’t say “It could be worse.”
I know “you mean well,” but often times it is better to be silent. Just being a shoulder to cry on, someone to lean on, is enough.
Until next time…
What was the most upsetting thing someone has said to you regarding your or your child’s disability?