Julianna’s CMT likes to throw curveballs – to the gut. I call them “BTW’s”. As in, By the way, she has scoliosis too. And paralyzed vocal cords. A dislocated hip. And that right diaphragm?…..not working. These are all the lovely gifts that CMT gave J during our hell years of 2013-2014.
When a disease takes so much away, you start to go numb. It’s a way of bracing against the pain of another loss — maybe if you expect the worst, it won’t hurt so much when it happens.
It doesn’t really work that way, of course. Expecting the worst doesn’t cushion the blow. It takes you to a dark place, and if you stay there long enough, the losses are much greater.
You see, numbness and love can’t coexist. If you love someone with a terminal illness, you will have pain. Reigning in your love to protect yourself just leads to more pain (and guilt). So the only answer is to love them and take the pain as it comes.
When you choose love over fear, you are able to see the beauty that was there all along. The CMT curveballs are still there, but they are surpassed by the wonderful surprises that come only through grace.
Wonderful Surprise #1: A&J
This week, Alex’s second grade class learned about Martin Luther King, Jr. and his fight for equality. They were asked to write a sentence about what freedom meant to them. This was Alex’s answer:
I wasn’t sure what he meant by this, but I knew I liked it.
I asked Alex about it the next day. Did he feel free in Julianna’s room because she doesn’t have the responsibilities (homework, hanging up her towel, etc) that he has? Because he can watch TV in her room? It wasn’t any of those things.
“I feel free in Julianna’s room because I wasn’t able to go there before,” said Alex. “And — I just like being with her.”
Up until the last month or so, Alex spent very little time in Julianna’s room. Their style of play (J is a director, Alex is a small tornado) doesn’t match up, and he’s not allowed to be near Julianna when he has even a hint of a cold. For the last few winters, he seemed to have a perpetual cough. When this happens, one parents is devoted to Alex, and the other is devoted to Julianna. We are careful not to cross contaminate. Strict infection control measures like these don’t exactly foster family bonding, but we don’t have a choice: the stakes are too high.
So far this winter, Alex has been gloriously healthy, and he has wanted to be with Julianna. After too much time taking a back seat to CMT and medical fragility, these two have finally been able to spend some time together as brother and sister. I wasn’t expecting it, but, oh, I am savoring it.
Alex wrote a few notes to his sister.
I believe that Julianna loves this more than anything.
Wonderful Surprise #2: Naughty J
It’s a novice parent move, leaving a baby unattended with markers.
This week, we left J unattended for just a minute — and came back to this.
With the help of lots of pillows and creative use of a hair elastic, Julianna was able to be a little naughty. She was so proud, and I was so happy.
Wonderful Surprise #3: Holding My Baby
I haven’t been able to hold Julianna in my lap for years. A combination of bad scoliosis, low tone and fear of making her aspirate kept me from trying.
The other day, I decided to give it a shot. It’s a bit tricky, and involves (again) a lot of pillows. Sometimes I get it all wrong, but sometimes I don’t. And when it’s like this, I’m in heaven.
J: Will I always be your baby, even when I am a queen? Or a giant?