Compatible With Joy-Trisomy18: An Emotional Week

Sunday, May 23, 2021

An Emotional Week

It's been a bit of an rough week for me, and I wasn't really expecting it so much.

I've been on edge since our last doctor's appointment. It was hard. It's still hard. This is where the doctor told me Covid would kill Aaron. Straight up. Not that it would be hard, might be difficult, could be a problem. It. Will. KILL. Him.

And that coincides with everyone around deciding that it's all over and life is normal again. No masks, no distancing, the last 16 months have just been a really bad dream. CDC says now that fully vaccinated people don't have to wear masks. Less than 1/3 of our state has been fully vaccinated and no one under 16 has been. But I see masks on less than 10% of people. This is HARD for me.

I've always loved being with people, enjoyed crowds. I know there are people who don't, but it's something I've thrived on.

I'm struggling. I'm having to walk out of rooms with a lot of people in them. I'm practicing breathing exercises. But I'm trying. My family will continue to wear masks. We've seen their benefit over the past almost 11 years. We've had all sorts of flus and colds run through the house. I got pneumonia (twice!) from the flu and spent most of the first six months I was subbing sick. Aaron didn't.

I'm being forced to focus on the lessons I'm learning. I lean on the Holy Spirit at church, focus on the messages and the music, and try to calm my heart.

And that was the start of my emotional week.

Thursday was Aaron's school dance festival. Every year they put it on. But this year we were missing his principal. She was an amazing advocate for her students, and a friend as well. I knew it would be hard without her, but I didn't anticipate crying before it even started. Most of the dances were dedicated to Kim, and I know she was there with us.

But the part of the week that caught me off guard was Wednesday. Wednesday, Michael was vaccinated. I think I was mostly excited for my shot back in January, and grateful when William and Andrew were able to get theirs.

But Michael represents that those who are closest to Aaron are all going to be protected. Those who interact with him daily will have a much smaller chance of bringing it home.

Yeah, I cried. And then again as I saw the giant wall where people had posted their

thanks and their reasons for being vaccinated. There were some funny ones, and some poignant thoughts. And it touched me that while there is a lot of pushback and vocal noise going on, there are also many who are stepping up and helping out.

I know Aaron's days are known to God. I know he has been protected thus far. And I also know that those days will come to an end, long before I want them to. It is His plan, and I do trust it.

But believe me, when you watch someone struggle to breathe, when you see them change to that ugly blue/gray of someone not oxygenating, when I think about what life will be like without my son, I simply cannot not do everything in my power to protect him. And so I cried out of relief on Wednesday.

Michael's card says, "My brother"

Lots of people my age are joking and laughing about the "empty nest". I used to dream of those days as well, especially when I felt like I caught myself coming and going at the same time. We're almost there. Next fall I'll only have two kids at home: Michael who will be a sophomore in high school, and Aaron. But to get to our empty nest, we'll have to bury a child.

There are lots of "lasts" right now, the last day of middle school and the last day of high school. We've been to our last high school choir concert, and our last middle school anything. I watched my last soccer game yesterday. These have been fun and a little bittersweet.