Yesterday we saw Grayson’s Mito doctor to discuss whether or not we should move forward with hip reconstruction surgery. I was fully expecting Dr. K to make the decision for us- to tell me definitively yes, he needs this, or no, it’s too risky. After waiting 2 hours past our appointment time before we saw…

I think one of the hardest things about raising a kid with medical issues is making decisions for his care that have risks, unknowns, and no real “good” options.  We saw an orthopedic surgeon this morning about Grayson’s dislocated hip. He had an X-ray done to see the current state of his hips, since the…

This has been an incredibly hard week. Mercifully, in the past few months, Grayson’s disease and health issues have been in the background- always there, but not the focus of our thoughts and worry. He’s been stable- no major illnesses, no hospitalizations, and it’s been months between seizures. We’ve really been cruising right along with…

I’ve gotten away from writing about the day to day happenings of life, and want to get back to doing more of that again. I know in the years to come, I’ll appreciate my efforts at documenting the every day, normal details of our family’s life.  First, thank you so much for all your congratulations…

I haven’t written in what feels like a really long time. The truth is, for the past three weeks or so, the internet has been a really, really demoralizing and hurtful place to be, and I’ve been trying (mostly unsuccessfully) to distance myself from this crazy vaccine war that’s raging on social media. I don’t want…

Dear Charlotte, Happy Birthday! We’ve had a full two days of celebrating you, and you are really digging the attention, presents and CAKE. Yesterday, we started the day with a breakfast party with your Grammie, Uncle David (with whom you share a birthday), Aunt Hannah, Theo, and Uncle Peter. Aunt Hannah surprised you with these…

I realized on Friday that Charlotte was exactly, to the day, the same age Grayson was the day he was diagnosed with Leigh’s, eleven days before his second birthday. That kind of baffles me. How is Charlotte already that old? Time is so strange- it seems like we went through so much more and it…

A few weeks ago, this article was circulating- a letter to siblings of special needs kids telling them how amazing they are. It really is a feel-good, idealistic letter, and contains everything I hope and pray for Charlotte as she grows up in a family with a unique sibling situation. Then I read the comments.…

Happy New Year! Our holiday season turned out pretty great- we spent a ton of time with family, ate a lot of food, celebrated the birth of Jesus, and gave and received some pretty awesome gifts. But I’m glad it’s over. I’m ready for routine, back-to-school, and the promise of a fresh start. 2014 was…