💙Today is World Down Syndrome Awareness Day💛

A year ago today we announced that our daughter Sophia would have Down syndrome. We were unsure what her needs would be when she was born, and I honestly didn’t know what to expect from her or myself. I was afraid in a lot of ways and of a lot of things. It was a difficult time. I was being torn down and rebuilt. 

From the time we found that something was “wrong” with Sophia I have been rethinking my language and reframing my thoughts. There is nothing “wrong” with people with Down syndrome or their chromosomes. What I would once call “normal” I now call “typical.” Sophia is a typical baby in many ways but in some ways she needs extra help. But don’t we all need extra help sometimes? With reading or math or riding a bike or with saying a certain sound? What is normal, really?

I heard all the things one expects to here about what it would be like to raise a child with Down syndrome. All of it was said in love, but some of it left me wanting to say more. I have much more to say about Down syndrome and I hope to write it all out, if only for myself. 

The thing I am thinking about right now is how so many people have a genetic test when they are pregnant and pray for a “normal” result and a “healthy” baby. When they get what they think they want they rejoice and are grateful and get to continue on with their pregnancy and life as planned. But what they don’t realize is that if they got a result they didn’t want, that their life would not be ruined. No, not in the way they think. Their lives will undoubtedly be different. But it will be so *so* good in a way they could never imagine. Do I still get sad I didn’t get that pregnancy and that child? Honestly, I do sometimes. But it fades in the light of Sophia’s eyes. 

I do not begrudge these people and their hopes. No one wants to see their child be in pain or struggle or be the butt of jokes and hateful and ignorant actions from others. We all want our totally unique child to be just like everyone else. We want an easy road for our children and ourselves. I admit I wanted those things acutely. I remember clearly thinking before I was pregnant with Sophia how the “worst” thing for me would be to have a child with special needs. It seemed so stressful and hard. It would never be over. And I didn’t want that. And then we found out about Sophia. 

The best thing I heard when I was pregnant with Sophia was that “people with Down syndrome are more like their families than they are other people with Down syndrome.” That spoke to me deeply. I knew that no matter what Sophia was going to face, she is a Kramer-Briano at heart. So she has a lot going for her in that respect. The other thing I like to say is that she is a Shiny Human. If you are familiar with Pokémon, you will know that being shiny is a very, very good thing. I caught a real-life Shiny Human. We are so lucky and I would never trade her for any other baby, no matter what her stats. 

I read a book recently (The Maid by Nita Prose) that has a line at the end that goes “we are all the same in different ways” and when I read that it rang in my ears. Yes. This is what we all need to know. There are not people with special needs and people without special needs. We are all people. We all have needs. And by some unknown combination of chromosomes it is very obvious that Sophia is different from most other people. She is and will be judged solely from her appearance. Being her mother has allowed me to look at people who all have differences, both apparent and not, with a deeper compassion and equanimity that I believe has come from God. I can also begin to see myself with my perfectionism and my myriad flaws in the same way. When they said having a child with Down syndrome is a gift, I didn’t really know what that meant. Now I think I do.