This space of mine has been neglected lately. Between home life, my day job and The Sunshine Co., I feel like I’m going in a million directions.
There are so many things that will stop me in my tracks because of my grief. So far, one of those things just happens to be dates. Today, March 9, 2018, marks two years since Blake was diagnosed with SMA. The second worst day of mine and my husband’s lives. The first, of course, being the day that she died.
This day brings with it so very much. Two years ago was the official beginning of the most horrific journey I have ever been on. Jeff and I talked last night about everything that SMA has taken. That is such a hard conversation to have. As much as we focus on all the things that Blakey taught and gave us, in the end SMA took her. Not only did it take her then but it took her future. It took her from sisters and all of her extended family. It took her from her parents. It still takes even though we fight every day to stop its aftermath.
I tried to get up this morning and proceed as usual. Nope. I decided I would stay home from work and do whatever I felt like. (By the way, I do feel very fortunate to have a supportive team at work that allows me some flexibility. That is never far from my mind when things like this happen.) I don’t generally allow myself to go as low as I want to. You know, stay home from work, sit in bed, not get dressed, etc. I always feel like this is what people think grief looks like. I’m more of a ‘stay busy’ kind of griever. Don’t be like me because it doesn’t work. Anyway, sitting at home was definitely the best choice for today.
I’m not really sure what I want to say but felt like I needed to say something. Thank you for listening tonight.
I have so much hope for the families that have come after us. With an FDA approved treatment, these sweet kids have so much more to help them then we did in 2016. Please know though, it is not a cure and there is much more work to be done. If you want to learn more about how you can help bring awareness and fight SMA, visit CureSMA.org or thegsf.org.