Meant To Be

If I’m being completely honest, I don’t really remember my life before Jade– meaning, my life before Down syndrome was such a normal part of it. Sure, I remember there being two and a half years where Elyse was an only child. I remember being newly married with no kids. I remember life before Peter. I remember growing up all over the United States with the best family imaginable.

…but I don’t really remember my life without Down syndrome. And maybe that’s because I was always meant to live this life and somewhere in my subconscious, I knew it.

My earliest memory of Down syndrome is an interesting one. I don’t remember how old I was– probably six or seven. I was on the West Coast with my family for a vacation of sorts. My parents were at a retreat and the kids had different activities planned for them during the days. There was one day where another woman who was at the retreat asked my mom to watch her daughter because she didn’t have childcare. Looking back on this, it doesn’t make sense. I don’t really know what the circumstances were or if I am remembering any of it correctly– All I know is that there was a day when my mom watched a 7-year-old girl named April.

I remember April running up to my mom and giving her a huge hug as soon as my mom agreed to watch her. She was so loving, happy, and completely accepting of a total stranger. My memory of our day spent with April is full of laughter and happiness and fun. April has Down syndrome, but I didn’t know it at the time. At this point in my life, I had probably never heard the words “Down syndrome.” I could tell that something was different about April but I didn’t know what it was and, frankly, I didn’t care because she was so fun.

That was my very first exposure to anyone with Down syndrome. I don’t have a lot of other memories about that day because I was so young. I just know that the memories I do have are very positive.

The next time I remember Down syndrome being significant in my life is when I was in third grade and my incredible teacher, Donna Russell, read my class a book called “The Man Who Loved Clowns.” Again, I was fairly young and I don’t remember a lot of what this book was about. (Having recently looked up the book to write this, I bet if I went back and read it now, I wouldn’t like it nearly as much.)

But I do remember what I consider to be the most important part of the book. One of the main characters was a man named Uncle Punky and he had Down syndrome. I remember, once again, thinking how fun and loving and full of light this character was.

Mrs. Russell also drove home one extremely important lesson which I tried to ingrain in every fiber of my being– accept others as they are and celebrate differences.

There were other times in my life before Jade where I had brief encounters with people with Down syndrome and I only have positive memories of them. But, April and Uncle Punky really set the tone for me. So much so that after I had Jade, my sister, Lauren, shared with me an interesting conversation she and I had when we were in high school, which I had forgotten.

I told her once that I wouldn’t mind having a child with Down syndrome. I said that… out loud… to my sister. What?! Sometimes I wonder if maybe I manifested Jade right into my life.

Neither my sister nor I remember our conversation being prompted by anything in particular or why I would have said that. I do, however, remember having those thoughts on and off in my life, since early in my childhood.

When I asked Lauren about our high school conversation, she said this: “When we were talking about it I think you said, ‘I would be really open to having a kid with Down syndrome’ in a that-wouldn’t-bother-me kind of way.”

And it doesn’t bother me. Not one bit. In fact, I celebrate it. I celebrate Jade and all of the lessons she has taught my family, my friends, and our expanding bubble. I celebrate her smile and her persistence and her joy. I celebrate her love and her light.

And everyday, I celebrate the fact that I now get to spend a lifetime helping her spread that light to the whole entire world.

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.

❤️