***So….it has been so long since I have blogged that I just found this post that I wrote back at the beginning of December and, for reasons that I cannot remember, I did not post. So this should have been posted on December 2nd….better late than never??? Anyway….
Tonight I met the mom of a boy that is in the cast of Nuncrackers with Large. We’ve know of this boy for a while because he is active in the Kansas City theater community, but this is the first time he and Large have done a show together. Several of us parents were lamenting at how busy life is especially with these theater kids and rehearsals and how most of us live so far away from downtown and the areas where most of the theaters are. All of us in the conversation were working moms. One of the mom’s has recently gone back to full time work and I was commiserating with her as less than 2 years ago I went from part time to full time too. I mentioned how that was already hard and then Medium was diagnosed with t1d this year and how much I hate being so far away from him every day. So the mom of this other boy sits up and says that her oldest has type 1 and has had it for 14 years. Who knew? She was asking how we were doing and commented how the first year was the hardest.
I sort of unleashed on her and told her about the downward spiral I took into the deep, dark pit of despair (the DDPOD) right after diagnosis. I told her that what sent me into that pit was reading things, mostly blogs on the internet, and being smacked in the face with the reality of what our life was going to be like and all of the things that I hadn’t yet worried about but now knew to worry about. I told her how I started a blog to deal with my emotions. She told me that she wrote and recorded a song with her son about how she felt. And as she was telling me this it was sounding really familiar. Turns out, we got her CD in the hospital with a bunch of other stuff; poems, books, websites, etc. And her song was one of the things that I just could not listen to in those early days. The words were written inside the CD and I started to read them, but couldn’t even finish. I didn’t want to learn any more things that I needed to worry about. I already knew that I was praying for a cure, but I wasn’t ready to really know what that meant. Because what it meant was that every day for the rest of my life I would hope and pray for a cure so that my son could live a long, happy life with legs that would take him where he wanted to go. So that he could see the world with strong eyes, and have a strong heart to find the right girl. (Words from Renee Austin’s song, “A Mother’s Wish”.)
So I came home tonight and I went somewhere I hadn’t been in a long time. I opened the drawer that held all of those poems, and books and her CD. And I got it out and I listened to it for the first time. And I cried just as hard today as I probably would have if I had listened to it back then.
Because it is true. It is the ugliest truth there is; that your child’s health and happiness are threatened every day.
But I have a different perspective now than I had ten months ago and I wasn’t crying from that same terrified place. I’m not going back into the DDPOD. That was a place where there was no hope.
I am still scared. I am still sad. I still worry every day about my son’s future.
But I have hope now. Ten months ago I had no hope.
We are doing this. It is hard, and scary and awful sometimes. But we are doing it.