It was a month ago today that we went to the Emergency Room and Benji was later admitted to the hospital. It was a month ago that the endless rounds of testing began with an X-Ray, two ultrasounds and an MRI that had my little boy scared out of his mind. It would be three days before his fever spiked and his rash began. It would be seven days before his skin and mucous membranes were burning from the inside out, and we’d finally have a name for what he was going through.
I learned on Friday night that I still have work to do in processing this experience. When we were at Southside for movie night, I saw many mothers I hadn’t seen during the month we were away. Two of them in particular who follow Benji’s progress lent me their ears and asked about his stay in the hospital. I didn’t like the sound of my voice when I was speaking. I thought I’d been doing a pretty decent job returning to gratitude from anger. But Friday night, I heard bitterness in my words. I sounded ugly and negative. I wanted to stop listening to myself.
This was an important discovery, especially on the even of our first weekend at home. It was a gratitude check, really. There will still be recovery for Benji in the days to come, both physically and emotionally; but in many ways, tomorrow will be the beginning of his new normal. He’ll put on a Southside uniform in the morning. He understands completely that there is no pressure to stay all day, but he is so excited to go to school and be with his friends. He’ll pause on Tuesday as we head up to All Children’s to begin long term maintenance, but he’ll return Wednesday, and Thursday, and every other school day he’s able to until his next appointment. On Friday, we plan to go to baseball practice. If his body is ready, on Saturday, we are open to the possibility of him playing in his first game since he was diagnosed. And on Saturday night, like every other kid in Sarasota, he’ll go trick-or-treating.
When I look at the past month through the lens of what Benjamin has overcome, and at the season of lesser intensity we are entering, I can find my gratitude again. Michael and I will have the opportunity to use our anger as fuel toward constructive change at the hospital. That is where it belongs. For now, I can inhale deeply the breath of life in this house. There was much laughter around our table tonight. Our family and kids’ friends came over for a low country boil, per Benjamin’s request. They made a gingerbread house and ate sweet things. I have spraypaint on my fingers from constructing Halloween costumes. There are two lunchboxes on the kitchen counter waiting to be filled.
There have been moments that make nightmares in these last thirty days, but they are in our rearview mirror now. Now, I look around us, and ahead of us, and I can see beautiful things.