As we ease into summer and begin to rest and recover from this past school year, I keep thinking about the next. A more typical school year for sure. And that makes my heart rejoice.
But it also makes it ache a bit.
As hard as the past 15 months have been, some things have been easier. I have had to worry less about many things. As the mom of a preteen with Down syndrome, it is no surprise that middle school can be the beginning of a hard season, as it is for many kids. Gone are the days of elementary school when everyone is together because, well, everyone is together. As it should, middle school brings growth in new ways and things change. And while he just finished 6th grade virtually, this fall will feel brand new. That makes me worry in a new way for my Ian.
Will he have a friend to walk with in the hallway? Someone who wants to walk with him? I am not concerned about him getting where he is going — I am worried about him getting there alone.
I think back to when Ian was just 24 hours old. A surprise birth diagnosis of Down syndrome, whisked off to the NICU, being diagnosed with a heart defect and being told he would need open heart surgery within weeks — all within 24 hours. After our visitors headed home for the day weary for us, we were left alone in the cool, dark corner of the NICU with curtains drawn around us with Ian on my chest. I whispered to Jason that if we could stay like this, the three of us tucked away in this little corner away from the world, we would be ok. I don’t think I had spoken a more pure truth in my entire life.
And I still feel this way during these times of transition when I am so scared for what comes next. If only we could be tucked away in the corner away from the rest of the world. Then we would be ok.
And even though we would be ok, that is all we would be — ok. Because that is pretty much what these past 15 months have been — us tucked away from the world. We were ok but not good. Or at least not as good as we would like to be.
Then, a perfectly time reminder today that I am not alone in all of this. I attended two sessions at the virtual National Down Syndrome Congress Convention. The incredible Terri Couwenhoven helping me navigate the world of dating and relationships as we support Ian having a life full of what we all want. Most importantly, giving him the dignity of a life of his own choosing. And a gentle reminder from her to have friendships in the inclusive world and also in our special needs community to make sure our kids have a big, safe place to land. So they are never alone.
Then wise words from Dr. Andrew McCormick on planning our kids’ transition into the adult world. Intentionally planning and empowering, but not doing it alone. That instead of using the word “disability” we should focus on diversity. That people with disabilities — and all of us — contribute to the diversity of the human condition. I love that because, at least to me, the word “disability” feels like a negative. Or maybe it is seen by others as a negative — that disability is synonymous with being seen as incapable.
He focused on bringing value. He shared how text messages were actually developed by the deaf community to support their ability to communicate. And that brought value to all of us. How we need to work together to help our kids get to an adulthood where who they are brings value to all of us.
Isn’t that how it should be? That each of us brings value to others?
Big emotions and ideas and dreams today — a meaningful adulthood, a partner, empowered to have the life he wants. It starts today, really. I know that. Day by day, month by month, year by year. But the mom in me wants to know that her boy will have friends to eat lunch with in the fall. That he will never feel like he does not belong. That he will never feel “less.”
And I know that being tucked in that corner is safer. That we would be ok. But I also know that that is all we would be — ok. And I want more than ok for Ian.
It will not be easy for Ian. It is not easy for many kids, or many of us really. But I think the difference when you have a child with Down syndrome is that you KNOW some things will be harder, that some things will be different. And gosh, how you wish it wasn’t so because your kid is simply one of the best people you know.
But part of the dignity of a life of Ian’s own choosing is navigating all of it, the good and bad. But never doing it alone. Middle school is coming again and I need to remind myself… I do not want ok. I want good. And that usually comes with some hard.
We will get there. Well, Ian is always ready. It’s me who needs to get there. But first, summer.