It’s the weekend. We’re back at our home in NJ…all of us…it’s wonderful, strange, and difficult. It’s the first time Liam and I have been here since February 26th. After his bone marrow test on Wednesday, we were cleared to go home for the weekend. We were going to leave on Thursday, but Liam was still in a lot of discomfort from the test and we didn’t think a long car ride would be too comfortable for him. On Thursday night we told him that we were going home the next day, and from that moment on he was fixated on home. It was all he would talk about. And the two things he said he wanted to do, in this order, were to go for a tractor ride with daddy and make a cake with mommy. He couldn’t stop talking about his doggies, being outside (I suppose you can take the kid out of the country but you can’t take the country out of the kid), and going shopping. (Yes, one of Liam’s favorite activities is grocery shopping with mommy. It was the only thing he requested after being discharged from the hospital last week and our first activity the next day was going to Whole Foods.) Liam couldn’t wait until we were in the car on the way home. It was all he talked about from Thursday night until we were in the car on Friday afternoon. And when we finally got in the car, he forced himself to stay awake. He fell asleep one exit before the exit for our home.
When I walked in the door the first time, my first thought was how different everything looked. I was convinced that someone changed the countertops. They weren’t that dark when I left. It was very strange to me - everything looked the same, but nothing looked the same. I felt like a visitor spending time in someone else’s home and I fought the temptation to get too comfortable knowing that I would only be there for 48 hours. Liam, on the other hand, reveled in being home. He woke up from the grey mood he had been in since the bone marrow test and as every minute went by, showed more and more of his carefree personality. It was so amazing to watch the transformation. In fact, as soon as he got out of the car…before even going in the house for the first time…he wanted to go for a tractor ride. Of course Daddy was more than willing to oblige. We spent the entire weekend savoring each moment together and enjoying each other’s company with no mentions of “stickies,” (what Liam calls the bandages that cover his central line) or of the other dreaded parts of his new routine. But as much as we tried to escape, there were the reminders when we had to give him Nystatin (something he takes 4xs/day to prevent mouth sores) and that he is so familiar with he calls it by name. The first time he said the word Nystatin, it made me very sad. Nystatin is not the first three-syllable word I wanted my young son to say. One of the more challenging moments for me was trying to answer Liam’s question about when he would be going to school. He talked about it a lot wanting to know if he would be going to school the “next day.” At one point I caught him talking to a giant card made by his teachers that has photos of each child in his class. He was having a conversation with his classmates about snack time. (It figures…the child we’ve had so much trouble trying to get to eat is fixated on snack time.)
I suppose it is fitting that our first weekend home is a time of such importance to both Christian and Jewish faiths. Our return home felt like a time of renewal, affirmation and community. It was a new beginning for all of us. The life I had when I left the house on February 26th was gone. None of our lives will ever be the same. But that’s not to say it’s all bad. In fact, our lives now are very much in the present tense and everything seems a little sweeter…from making a cake and laughing with Liam as he evaluated the flavor of the icing we were making together, to watching my two precious children play together and enjoy each other’s company in the only home they’ve known in their short lives. Ella was so happy to be in her home with her mommy, and Liam spent a lot of quality time with Daddy, just like he used to in the “old” days.
