For the last two months, I feel like we’ve been living in a bubble. Since I had my surgery everything medical for my children has been on hold. I was focused on my recovery and spent most of my time alone, while my husband was in survival mode to take care of all of us. There was no time to think about anything else.
Yesterday, we were brought back to reality when Allison stepped on a metal piping tip, taking a chunk out of her foot which required a trip to the emergency room for stitches. Today she had a scheduled follow-up appointment with her neurologist which entailed referrals for new evaluations and testing. The neurologist feels that Allison’s gait issues are from hypermobile joints and wants her evaluated by a physiatrist and geneticist. She’s still having swallowing issues and has recently started to complain about chest pain and stomach pain so she wants her to see a gastroenterologist and have a swallow study done with a speech pathologist. Add all of that to the neurosurgeon’s request for repeat brain and spine MRIs and a renal ultrasound and we are going to have a busy few months ahead of us.
I feel like we are being thrown back into the deep end. Two months doesn’t sound like a long time, but when your days and weeks are constantly consumed by doctors appointments and medical testing and then you get a reprieve, it is so easy to forget what that life was like. Every day I was on the phone scheduling an appointment or meeting with a doctor to discuss the issues at hand and what to do next.
I should be mentally rested, but somehow that feeling of being overwhelmed crept right back in. Allison has been traumatized by her surgery and becomes upset and fearful at the mention of a doctor’s appointment. The thought of putting her through anything more is heartbreaking, plus the uncertainty of what they’ll find is more than I can handle. I want to go back to our bubble where we could get through each day without the stress of the outside world. I want my babies to be healthy and not require numerous visits, tests, and surgeries. But most of all, I want to push away the guilt I feel for passing on these illnesses.