Another Mothers Day has come and gone, and while it was good (sweet cards and gifts from my family, church, and dinner with extended family), it wasn’t exactly relaxing. Grayson has had two really rough nights- he’s gagging and retching like crazy and last night just cried and cried in my arms until he fell asleep. I’m so thankful he is a lot better this morning, although he definitely still isn’t himself and his “voice” sounds absolutely awful from all the gagging.

I think in some ways I’ve taken for granted how healthy G has been for so long. A year ago he was in the hospital recovering from his hip surgery, which were some of the hardest days of his life, both for him and me. But since then, things have been relatively smooth for him. Since life has been so jam-packed with a new baby and moving, the severity of Grayson’s disease and what it is doing to his body often gets pushed to the back burner of my mind.

But last night, holding his broken, retching body forced me to focus on the awfulness of his disease. At one point I had him calmed down and his legs were relaxed under my right arm. He fell asleep and I relaxed a bit too and shifted my body. That one small shift immediately caused his muscles to contract and his whole body stiffened and the painful crying and retching started again. I felt so helpless; all I could do was rock him and kiss his face until he was able to relax again. I held him for a long time, and was overwhelmed by the fragility of his body- his legs and arms have become so, so skinny and stick-like, and it’s hard to cradle his hips and feel the metal holding his bones in place.

I know we are lucky- Grayson is here, and knows how much he is loved. Right now he requires relatively few medical devices to keep him alive. He is able to go to school, church, and anywhere else we want to take him. He can listen to and be soothed and entertained by music, and even some TV. He laughs. But he’s sick, and his body fights against itself every single day.

It’s such a hard balance- trying to cherish and not take for granted every single day we have with Grayson, while at the same time living our “normal” busy life with two other children. Juggling these two realities makes me so thankful that we are done building our family. Today on Houston Moms Blog, I wrote about this and how my heart and head are now in agreement about closing our baby-making chapter, although I didn’t really get into the huge impact Grayson’s situation made on that decision. Thanks for reading.