Vulnerability

In the beginning of October, I wrote a post inviting anyone to ask me any question(s) they had about Down syndrome or life with Jade, without worrying about being offensive or rude. Minutes after I sent that post out into the world of Facebook and internet strangers, I received an incredibly thoughtful, daring, and vulnerable question from someone I used to work with. She is not even ten years younger than me, but in a very different stage of life. When I worked with her, she stood out to me as a strong woman and leader, which she most certainly still is today. Ten years ago, my life looked very similar to how hers does now, so I understand where her question came from.

This was her message to me: “I saw your post about Down syndrome on Facebook and read the whole thing and just wanted to thank you! A conversation my friends and I have been having recently as we get away from CGA and start having serious relationships is eventually having kids, and we’ve definitely been struggling with whether we want kids or not and beyond that the feelings we would have if we found out mid pregnancy that they had any sort of issues and the challenges that come with that because knowing myself I would find a reason to make it my fault if I had a child that wasn’t necessarily “normal”. I was wondering how you coped with those feelings and if having Jade made you nervous. I don’t know if I phrased that question necessarily correctly and I’m really sorry if I didn’t, but I would love to hear your perspective!”

I love this for so many reasons. This message is so real and vulnerable.

“…If I was in your shoes, I think I would blame myself for having a child that was not what society views as ‘normal.’”

This idea is both completely understandable to me and very sad. I am not at all offended because I understand that this question comes from a place of genuine curiosity and self-preservation. I love that she and her friends are having these conversations and I love that she felt comfortable enough to ask this question.

I don’t feel completely qualified to answer it, but I will try.

First of all, I didn’t have time to feel any of those feelings mid-pregnancy because we didn’t find out that Jade had Down syndrome until she was born. We chose not to do prenatal testing when I was pregnant and looking back, I wouldn’t change a thing. I like to think that my reaction would have been the same if I had found out that Jade had Down syndrome when I was pregnant, but I honestly have no idea. I think a lot of my positive reaction to her diagnosis was due to the fact that there was a new living, breathing, beautiful baby girl lying on my chest at the moment I realized she had Down syndrome. For me, there was simply no room for negative feelings– only love.

But that doesn’t really answer the question or help whatsoever. So, I guess I would say this to the strong woman leader who asked– having a baby is a huge, life changing event. Before you get pregnant, there is no way to know what your child will be like, genetically or otherwise. Every baby is different, no matter how many chromosomes they have. You and I were raised (or at least went to college) in an extremely rigid environment with high expectations and low tolerance for mistakes or vulnerability. Becoming a mom makes you inherently more vulnerable because all of the sudden there is such a huge part of you– something which grew INSIDE of you– out in the world and you no longer have control. There is another life which you are completely responsible for, yet unable to protect from the inherent dangers of life. Your child will get bumps and bruises. They will bleed and possibly break a bone. They will (hopefully) love and (likely) have their heart broken at least once. It is a kind of vulnerability I had not experienced until I had kids of my own.

Having Jade made me nervous only because I grew up in a world where others’ perception of me was extremely important. I didn’t know how others would perceive Jade, so I was scared. However, my immediate instinct was to show them how amazing she was. This was likely due to my own perception of people with Down syndrome, which I will expand on in a future post.

Most importantly, I didn’t blame myself for Jade having Down syndrome for two reasons. One is simply science– if you look up what causes Down syndrome, the Mayo Clinic will tell you that Trisomy 21, which is the type of Down syndrome Jade has, is caused by “abnormal cell division during the development of the sperm cell or the egg cell.” Essentially, it is a fluke which cannot be blamed on anyone. I didn’t do anything to cause Jade to have three copies of the 21st chromosome– she just does.

The second reason I don’t blame myself for Jade having Down syndrome is because I truly believe that everything happens for a reason. Since having Jade, I have found myself on a path of advocacy where my hope and goal is to inspire acceptance and change. I never envisioned that I would BE on this path, much less how passionate I would feel about it. Jade has Down syndrome, in my opinion, because nature intended for her to have Down syndrome and there is really no way to know why. I now also believe that Jade has Down syndrome because I was meant to raise a child with Down syndrome in a world that still has a long way to go in inclusion and acceptance of anyone who is deemed “different.”

So, all this to say that having a baby is a huge decision, which I applaud you for thinking and talking seriously about. There are a lot of unknowns.
If you do decide that you want kids, don’t let fear or the “perfectionist” society we were raised in talk you out of it– those thoughts just might be masking a truly beautiful life with your child(ren), no matter the number of chromosomes they have.

❤️