My Biggest Fear About Raising A Child With Down Syndrome

I was recently prompted with the question “What are your fears while raising a child with Down syndrome and what is your mantra for getting through fears?”

Down syndrome & Fear. So often these words are tangled.

Getting the diagnosis for Down syndrome brought  So. Much. Fear. I was sick to my stomach with the inevitable challenges that we were going to face.

We had a prenatal diagnosis so we had the chance to back out of this life. We chose to keep her. Don’t confuse that with total comprehension of Down syndrome and what it meant. We were clueless.

I didn’t know if my child would be smart or beautiful. I didn’t know if she’d ever have relationships. I didn’t know if I’d ever truly love her as much as I would a neurotypical child. (I actually thought that!)

We chose to keep our baby even though we knew the road ahead would be difficult.

Fast forward- Kara is almost 18-months old & most of my initial fears are long gone. Mainly because she has proved them wrong in every way. Smart? Beautiful? Social? She’s all these things! …and the amount of love I have for her is not something I will even attempt to put into a sentence.

She is my heart & soul.  I have every faith in her.

But I still have two BIG fears.

BIG, consuming, sick-to-my-stomach fears that are still with me as I raise my child with Down syndrome.

The first fear is that she won’t understand why I write about her, why I share our story, why I started doing it & why I continue. She’s bound to come across my work someday, I’m not naïve. Though this is always in the back of my head, I refuse to sugarcoat my thoughts & experiences because I feel it’s important to share raw emotion and be transparent. How else will I spread our message if I don’t have my readers’ trust?

I hope she sees the importance of every word, feeling, and thought…good or bad. I hope she sees that because of both the challenges AND the sunshine-y times, we are changing the minds of people all over the world when it comes to Ds.

I hope she sees that above all I am CRAZY about her & I wouldn’t change a single step of this journey. Not for a second.

My other big fear actually has nothing to do with Kara.

She’s perfect.

My absolute BIGGEST fear while raising a child with Down syndrome is everyone else. I am scared that this world won’t change and it won’t be good enough for her & others like her to grow up in.

Just in the past year there have been two major stories that have come about & have brought me to my knees. The first being the news of Iceland pushing the abortion of all babies with Down syndrome & the other being a comedian on a Netflix special making fun of those with an extra chromosome.

It wasn’t even the stories themselves that crushed me, it was the unbelievable amount of HATE that was stirred up & spewed at the Down syndrome community. Parents being attacked for standing up for their children and children being attacked for simply existing.

It literally makes me sick.

It makes me want to grab my baby and go live in isolation where she, nor I, will ever have to prove a single thing. I will say it again, she is perfect.

But I get through the day, as we all do. I take a break from social media, from the news and the hate. I take a deep breath. I remember that I’m never alone. I remember that the majority of people in this world are GOOD.

& I tell myself that HATE WILL NOT WIN.

HATE WILL NOT WIN

HATE WILL NOT WIN

HATE WILL NOT WIN

HATE WILL NOT WIN

HATE WILL NOT WIN

HATE WILL NOT WIN!

My daughter has worth. Just as much as someone with 46 chromosomes. Just as much as those with 47. She has worth.