We have had a few days without appointments, because I have not been well enough to take James to the Transplant Gym. Cooking, dishes, and laundry aside, I have been sleeping, sleeping, and sleeping. Unfortunately, I'm not feeling a lot better, and James has to return to the hospital for appointments. We head out early in the morning for James' weekly lab work and I will have to find the energy again this afternoon to head back to the hospital again for physiotherapy. I won't be able to stay in the Transplant Gym, because of my infection, but I will find a corner to sleep, set my alarm, and return to pick him up within an hour and a half.
I'm disappointed that I also won't be well enough to go to work tomorrow. I've been working as a behavioural therapist with a child with Autism Spectrum Disorders on Saturdays. It is a welcome break for both James and myself. James spends some time with a friend, and escapes into his computer for a few hours. For myself, I've always been incredibly independent, and the isolation of the transplant world has also mean a sense of identity loss. Our world has become smaller and smaller. Despite our best efforts, it can feel as though our lives revolve around Cystic Fibrosis and waiting (and waiting and waiting) for re-transplant. My Saturdays are an opportunity to re-engage with the part of myself that has drive and passion for working with children with special needs and disabilities. I'm working with a sweet child with a high dependency for a rigid routine and I feel guilty that my absence will also impact the child's day.
On a side note, our wall of love from family and friends has grown and grown to include a second wall. We are so grateful: