Posts
Tough News
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…
Just Surviving
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…
Internet Hate
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…
Letters to Charlotte: Two Years!
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…
Time
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…
Siblings of Special Needs Kids
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.…
Hello 2015
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…
Letters from Santa 2014
Every year, my dad Santa Claus writes the kids letters. These letters are one of my favorite parts of Christmas. Enjoy! From the Desk of Santa Claus December 24, 2014 Dear Grayson: Well, here we are together again, on your fifth Christmas. After five Christmas Eve visits (and four years…
Letters to Charlotte: 23 Months
Dear Charlotte, Oh my Charnado, here we are- you are almost 2! When people ask me how old you are these days, I always answer that way- “Almost 2”, because you are most definitely the embodiment of a two year old. You are silly, sweet, defiant and frustrating at times, and full of endless energy.…