Remember

“Remember, remember the 5th of November…” – English Folk Verse (c.1870)

Mia’s birthday is coming up on November 5. I don’t think I’ll ever forget her birthday. Not because of her diagnosis or the traumatic birth day. I actually thought about writing her birth story a year later, but decided it’s pretty pointless. I feel like she was really born when she came home, and we learned who she was outside the doctors’ descriptions of her diagnosis.

The real reason I will never forget her birthday is because it’s Guy Fawkes Day. I’m sure you’ve heard of or watched the movie “V for Vendetta,” which was derived from his story. He was arrested for attempting to blow up Parliament. The Brits still celebrate the day of his capture by burning effigies. The poem the British children say is: “Remember, remember, the 5th of November/ The Gunpowder Treason and plot/ I know of no reason why Gunpowder Treason/ Should ever be forgot.” So, every single time someone asks Mia’s date of birth, I sing it in my head. “Remember, remember the 5th of November.”

I didn’t think it would be emotional as her birthday drew near, but it is. Although, I think it’s for a number of reasons, but the biggest is that I think about how much we’ve all changed over the past year. I don’t feel like the same person. This may sound very dramatic, but I find it highly appropriate that her birthday is on Guy Fawkes Day because that was the day that my life was completely blown up.

I used to care about a lot of things that don’t really matter all that much. I’m finding this year really strange because, since the life that I knew (or thought I knew) is gone, I feel like I have to start again. It’s like I’ve been reborn this other person and now I have to figure out who she is. It’s becoming very clear, however, that I’m going to have to build this person myself.

And Mia? I think back to those first days in the hospital and all the dread I felt. What will she be even doing by one? Would she even be rolling over? Would she know who we are? What was her level of disability? What are we dealing with here?

Nothing the doctors said prepared me for this little girl. Over the course of the last year, I know I’ve felt like I’m in some sort of parallel universe – this parallel universe of “typical.” For the most part, she’s doing everything a typical baby should do. I have no idea what is going to happen this next year or the next 20. I’ve been trying not to ruminate on it, even though it’s really hard not to. She’ll develop into the person she’s going to be in her own time and on her own schedule. My job is just to teach and get out of her way.

Even though things have been pretty typical around here, there are still things that remind me of disability. Getting her measured for orthotics on Friday was one of those moments. The person measuring her said that she might need bigger orthotics – AFOs – because of her hyper mobile ankles (common with Down syndrome). He asked, “Is she doing any standing yet, with those ankles?” I said, “Yes, all the time; she likes to stand.” He replied, “I guess it doesn’t bother her.” Later I thought more about this. Mia has no idea that she’s different and it doesn’t bother her. In fact, she’s doing things that are hard despite her disability.

The countdown to the big birthday has begun. I think I’m ready for it. I know I’m ready for the cake smashing and the presents. All I really know is that we got through this first year with all of its ups and downs and none of us can imagine our life without Mia Katarina.