“Open up my head and let me out” – Dave Matthews Band
I’ve never been one for journals. Or writing down what I’m thinking. Or sharing it. But now there’s just so much to say. The thought of starting this blog first came to me in the summer of 2016 when I was pregnant with my twins, and Tim and I had recently been told that one of them had an extra 21st chromosome, also known as Trisomy 21, or Down syndrome. We sought a therapist to help us work through the initial shock of the diagnosis and in one of those sessions I said “maybe my purpose now is to do something, like write a blog letting people know about our reality with Down syndrome.” You see, after we found out, I sought information. And I didn’t find what I was looking for. What I did find, and definitely agree with wholeheartedly, is that families with a Ds (Down syndrome) child love their kids fiercely and are loved back fiercely by their kids. We are a lucky tribe of families who have these amazing, loving, beautiful, and unique kids. All of this is true. Yet it wasn’t what I needed to know. Our doctors told us that along with Ds come (possibly) certain health problems, some you can discover in-utero and some you won’t know about until after birth. What does that mean? How does that affect life for not only us, but for our currently unborn child? What does a Tuesday look like for a child and their families? I just wanted to know what might be on the horizon. Yes, every child is different, but I needed a dose of real, every day life…and I couldn’t find it.
So here I am. I want to share our day to day. What I thought while pregnant. The issues we have faced, are facing, and how we deal with them. I want to share what we’ve learned about our son. My purpose is not to be the be all and end all of resources for the Down syndrome community – there are some great overall resources out there – but rather to share what we’ve done in hopes that maybe one of these things will help someone else. Maybe we found a great toy that worked for Brighton in some great way. Maybe we have a great tip on how to get more sleep when it comes to overnight feedings via his GJ tube and feeding pump (I do – it’ll be a post soon!). I’ll share info about the equipment we use, why we got it, and how I never thought we’d be needing it. Waters I never knew we’d be navigating, and how we sailed through (or got caught in the tidal waves – it’s all possible!)
For me, it will be an outlet. For you, I hope, a resource. Or if you just want to get to know me and my family better, so be it. I have so much to say!