I am still in my pajamas at 10am on a Wednesday. Scrolling through my FB feed, sipping coffee.
The epitome of a mom totally off-kilter from daylight savings time, peeved with Winter. Who decided to finally show up in March, bringing cold temps and relentless winds. Basically, I am riding the lazy train today. It’s cool. Needs to happen every once in a while.
Anyway, I am seeing the kind of posts that pop up in my feed this time every year. It’s World Down Syndrome Day on March 21st. I see the posts celebrating it; and I see the posts not celebrating it. Two sides generally. The one about how great life with Down syndrome is; and the one about how parents wish Down syndrome was not a part of their child’s chromosomal make-up. Validity to both sides. That’s simplifying it a lot. There is a lot of education and advocating being shared too. But it occurred to me, after reading a particularly vulnerable post from a mom about her child, that my opinion about WDSD does not fall into one of those two categories. For me, it is about shifting the narrative. My opinion is that my child is made as she is meant to be. She is a perfect conglomeration of her parents, with roots from generations of family genes that came long before her; and, she has a spark of something extra. A whole extra 21st chromosome to be exact. My child with Down syndrome is meeting many milestones; and most days, I forget that she has Down syndrome. But that’s not why I don’t hate this diagnosis. Believe me, I have experience with a genetic make-up that reminded me every day that my child was not typical.
My first child was beautiful. Amazing. A. Wonder. She changed people–for the better. She taught people–without speaking a word. She imprinted her spirit on the lives of so many people. It was a good life. But it was heavy, complicated, and freaking exhausting. There were multiple medical specialists in our lives, she was profoundly delayed in all the developmental and cognitive areas, and she had so much medical complexity that doctors couldn’t quite figure her out.
I spent my days wishing she didn’t have the genetic condition she had. I felt that she deserved a better life. Because that’s what we are taught in this world. That disability, medical complexity, cognitive delays—these things equal a bad life. It’s not true, but it took me a lot of time to come to that conclusion; long after my first child passed away and my second child was born.
When I became pregnant with my second child, I was terrified to repeat the same experience. I spent those first few weeks of pregnancy wishing and praying that she would not have the same genetic condition as my first child. I breathed a sigh of relief when the doctors said that she did not. However, they informed me, that she did have Down syndrome.
And, in my less than infinite wisdom about Down syndrome, I was terrified, and heart broken. I hoped and prayed some more. Specifically—that they were wrong.
Even after she was born, I sort of thought they’d just skip on up to my bedside and tell me, “Oh, by the way, she doesn’t have Down syndrome after all, enjoy your perfect future”. Seriously though, fear played a huge role in my denial about the diagnosis of Down syndrome. That fear was rooted in my past traumatic experiences and loss with my first child; and it was buoyed by the misconceptions and lack of understanding about Down syndrome that is propagated by the world we live in.
I didn’t think I could lose another child without losing myself entirely. Because that’s what I thought would happen based on the doctor who “educated” me during my prenatal diagnosis—that my baby would have a heart defect, have little quality of life, and possibly die.
But here she is, five years old and super freaking amazing. And, after having two kids with genetic differences from the “norm”, I finally get it now. Having Down syndrome isn’t an automatic ticket to the hard life. And not having Down syndrome isn’t an automatic ticket to a life on easy street. But somehow, this is the idea that so many of us have. If our child just didn’t have that extra chromosome, she could do all the things. But, shoot, life just isn’t that one dimensional. Life is messy, complicated, and heavy for most of us, regardless of chromosomes. And, for those of us that have more unique situations—parenting a child with a disability—our loads tend to feel messier, more complex, and much heavier. Probably because we are more isolated, and we lack the unspoken comfort that comes from moving in step with the crowd along the same journey. That is one of those things that I wish was different about parenting a child with a disability—the isolation from the rest; and the feeling that our children are not and will not be supported and accepted by anyone but us. Having that extra genetic material or not having it is not what determines quality life or contributions to this world. And it sure as hell doesn’t determine worth. But there is this underlying theme that not having Down syndrome, or any disability, really, would be better than having it.
And I think that’s where we are getting it all wrong. It’s not about what we are born with, but the world we are born into. Currently, in our society, by many people, life with disability, medical struggle, and/or mental health struggle is still viewed as less than. It may be freaking difficult at times, but it is not less than. The world we live in is so deeply marked by stale ideas and practices that continue to put people with disabilities in the shadows. So, I don’t hate Down syndrome or wish it away. I don’t even hate my first daughter’s genetic anomaly (anymore). Because, to me, that’s not the problem that needs to be solved. How this world accepts, acknowledges, and supports all the people in it, including those with disabilities, that’s the problem that needs to be solved.
I want a better healthcare and mental healthcare system in place to support our disabled community. Hell, to support the caregivers too! I want supports in place to help guide parents and caregivers as they navigate a journey caring for their loved ones without them experiencing the isolation and burnout. I want a network of friends, family and perfect strangers to lift up my child, any child or person with disability, so that she can take her seat at the ta
ble with them and, together, they can enjoy meaningful interactions. I want to celebrate World Down Syndrome Day not just because I accept and appreciate every chromosome that makes up my child; but, also, to shift the narrative. To acknowledge that human differences contribute to the whole picture of life. To spread the idea that human worth is not determined by chromosomes. To help create an opportunity for dialogue and bolster understanding—breaking down insecurities and fostering a growth of empathy and acceptance. I am only one person. I know. But the flutter of a butterfly’s wings… And, it needs to be said that it’s okay if there are parents out there in our Down syndrome community who just aren’t in that place to celebrate, advocate, or fight right now, for whatever reason—life as a parent of a child with a disability is heavy. I am here, and I will help carry you through my words and intentions if you need me.