Jan 20, 2014 0 Share

In Sickness and in Health

Medical monitor with family icon on screen.

This past week was not about Cameron. It wasn’t even about autism. I finally had a break from my daily compulsion of spending hours behind my computer, in hopes of discovering the perfect program which will pave Cameron’s path for the future. An entire week without a single visit to Think College! How did I manage such a clean break without relapse? Why, I got sick of course.

Cameron’s sister, Chloe, spent last weekend feeling unwell, and by Sunday afternoon I was feeling icky myself. Monday morning, Chloe woke up with a nosebleed which ended up requiring an overnight stay at the hospital. Yes … an overnight stay in the hospital from a nosebleed. Chloe has a bleeding disorder called von Willebrand Disease which prevents her blood from clotting normally, and when a nosebleed happens medical intervention is often required. This episode was a humdinger, so I didn’t waste much time with our usual home triage methods before heading for the ER.

Time always slows down when you’re in an ER. While Chloe was seen to quickly, the order to administer her medication to stop the bleeding seemed to be slow in coming. My flu symptoms were beginning to rear their head, and before long, I was sharing Chloe’s gurney because I just couldn’t sit up anymore. But I needed to advocate for my daughter’s well-being. I needed to convey to the staff that I know my daughter’s condition, and that treatment needed to get underway. My head was pounding, I had broken out in a cold sweat, and I was beginning to feel sick to my stomach. And Chloe wasn’t doing so hot herself. The medicine was administered, the bleeding stopped, but her blood work showed her white count was low. The doctor ordered a chest X-ray to rule out pneumonia. The doctors ended up admitting Chloe at the end of the afternoon. Luckily, my husband was not traveling last week, and was quick to come to my rescue. He took care of Chloe, and I went home and collapsed in bed.

Chloe was released around lunchtime the next day, and we had a follow-up appointment with her hematologist on Thursday. The hematology department is part of Pediatric Oncology. It seems so wrong that there should be such a thing as Pediatric Oncology. Chloe, her dad, and I were waiting in the Pediatric Oncology reception area, and a staff member from another part of the hospital walked in. She looked at the three of us on the bench together and gave us “that look.” It was a look of such heartfelt pity and sympathy … and it made me bristle. Of course, when you’re in the Pediatric Oncology department, everyone assumes your kid has cancer. And of course, kids having cancer is just wrong. But even if my child did have cancer, I wouldn’t want to be pitied. Just like I don’t want to be pitied because I have a child with Autism Spectrum Disorder. We’ve all heard the well-meant encouragement, “God only gives special children to special parents.” Well, all children are special. Parents? Maybe not so much. But all children are special and come with their fair share of problems. All we can do as parents is manage those problems to the best of our ability until they’re ready to manage the problems for themselves.

So even though I took the week off from autism, I didn’t take the week off from stress. But even a lousy vacation can provide a new perspective. I certainly have a fresh perspective on what’s important and what deserves my energy. I’m feeling better in more ways than one.