I used to have an idea of what my children’s doctor appointments were supposed to be like. I always thought you would take your child to well appointments and show off all the milestones they had met. You’d all leave with a beaming smile.
That is exactly how it went with my first child. When he was sick, I would take him to the pediatrician who had answers and solutions to fix him. I really did take that all for granted. I should have been thankful for all those easy “normal” appointments.
Then came my second child and everything was completely different. It seemed like every doctor’s appointment I was told she needed therapy, was lagging behind her peers and needed more testing. As we became aware of her degenerative condition, I dreaded going to her doctor appointments. It was never good news.
Some things got worse and more issues came up at almost every appointment. She has scoliosis and must be checked for progression every 4 to 6 months. It seemed like every visit I was told her curve had become worse and surgery might be in her near future. Scoliosis surgery is a big procedure. It worried me terribly.
Then, at one of her checkups, the doctor came in and showed me her spinal X-rays. Her curve was stable! Oh my, those words will never leave my memory. I was not hoping for any doctor to ever tell me that she was getting better. But stability – that was and is the best word I could hear.
The lesson here is to keep your head up. Know that there will be many appointments that will bear bad news, but no change could be the best news from a doctor ever!
Raising a child with complex disabilities or chronic illness is challenging for you and them. Read this article for ideas and information.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.