Wednesday, September 12, 2012

Mito Awareness Week

Have you missed me? Well, I'm going to be back in full force in the coming weeks to help shed some light on an ugly disease, I hope you'll join me for Mito Awareness week, Sept. 16 - 22.

If you'd like to support us next week for Mito Awareness week, please consider changing your Facebook profile photo to help promote awareness. Above is an option if you so choose.

After Will was diagnosed with Leigh’s on July 5, 2011, he kind of got obsessed with reading this one particular book, “The Rain Came Down” and wanted to read it every night. It starts out with chaos in a house because of the rain coming down – the dad yelling at the dog and waking up the baby; then it goes on to a truck driver trying to deliver tomatoes, grocery person knocking over his fruit stand, a little boy chasing a paper boat in the gutter and splashing a little girl and so on.

And then magically, the rain stops. All the “Honking, yelling, bickering and barking stopped and the air smelled fresh and sweet” (I have most of the book memorized now as he still loves it). At the end of the book, the family it started out with concludes the book by “having a picnic in the backyard while the baby, chicken, dog and cat slept in the warm afternoon sun” – After he was diagnosed I could barely get through that last page without shedding a few tears. I still get choked up.
I just want that so badly. I just want to be content and add more babies to that page. I could do without the chicken, but if that meant having that idyllic ending I’ll take it. I just want to worry about whether or not my kids will play soccer or basketball; make As or Fs; fall in love… I just want that with my whole being and it just feels like it’s not going to happen.
Random addition to the post, but it's what I'm feeling today. We read that book last night together and yesterday was a really rough day for a lot of reasons. Additionally, please say a special prayer for another family who I know just experienced their "July 5" as they received a Leigh's diagnosis for their sweet baby. 


  1. I'm thinking of you. Hugs, sister.

    Lisa (Miles)

  2. always thinking of you and your sweet family. hugs!