She’s 18 Now
Olivia turned 18 on May 30th of this year. At the time, Olivia was doing well and the near future was not about hospitals and surgeries and scans and pain, chronic undeniable pain. It was about college and driving and new friends. It was about living away from home, from me. It was about growing up and needing me less, not more.
Now I walk that fine line between being the caregiver for my child and being a caregiver for an adult. Two days ago, she had her 19th surgery. It was the first time I did not go to the operating room with her. She is an adult. As they started to wheel her into surgery, I instinctually began to follow only to be stopped at the doors to surgery. I am torn between watching her face her future as an adult with a rare disease and chasing after her as my child. I have always been there, but I know I will not always be there.
The doctors now direct their questions to Olivia. I sit quietly and let her answer. I only step in when it is clear that she doesn’t really understand the question or instructions, but I will not always be there. She schedules and keeps track of her physical therapy appointments. We are starting off with small steps, but I know I must teach her to take the lead in her own health care. I know I must teach her that having a rare disease is very different from having a more common illness. By nature, Olivia is not a fighter. She is kind. She is a people-pleaser. She rarely speaks up for herself and I worry that her health will suffer. She is rare. She needs to become a fighter and her own advocate. I will not always be there.
Recovery has changed too. She has been sleeping in my bed in case she needs something in the middle of the night. I took care of her every need during the first two days, but as she shook off the effects of the anesthesia I stopped waiting on her and suggested she start doing things for herself. This morning she made her own scrambled eggs. She didn’t want to. She wanted me to. My heart is breaking because I am her mother. Taking care of her is like breathing. It’s what I do. My head knows that I am doing the right thing. I’m not a bad mother. I am not unkind and unfeeling. There are so many things I do not know about Olivia’s disease and her future, but I know for certain that I will not always be there.