“Why don’t you take him to the pediatric emergency room,” the doctor said in a soft and calming tone. I had heard those 10 words before. The first time landed us in the children’s hospital for 4 long days; the second turned out to be precautionary, so we were discharged in just a few hours. This time would prove to be different, and it would remind me that every dark day has a silver lining.
Harrison had a virus. This bug came just days after a case of double pink eye (I’m not sure of the technical term for this condition, but the poor little guy had conjunctivitis in not one, but two eyes). After an initial dose of eye drops, poor Harrison’s face swelled up from an allergic reaction. With my typical undomesticated flair, I just figured Harrison was crying because his pink eyes were bothering him. It took an hour before my clueless self realized Harrison looked like a has-been celebrity who washed away her pain with whiskey and cigarettes. Please note, the picture below could be a little disturbing.
After another trip to the pediatrician and some new eye drops, Harrison’s pink eyes cleared up – just in time for his MRI.
Months ago, Harrison’s opthamologist had recommended a brain scan to ensure the little man’s eyes were developing normally. Since birth, Harrison had suffered from nystagmus, rapid and uncontrollable eye movements. His little blue eyes would dart from side to side, especially when he was tired. While I had read that nystagmus could simply be a side effect of Down Syndrome, it could also signify a much more dire medical condition like a brain tumor or a disease of the central nervous system. (Ironically, excessive alcohol use can also a cause nystagmus, so once again Harrison’s illness is reminiscent of a washed-up movie star drowning his or her pain in high balls and old-fashioneds.) Daddy and I put off the MRI for months because babies must be sedated to ensure they are still for the medical imaging scan. We were scared of how anesthesia would affect our little man and his Down Syndrome-related low muscle tone. Could he sustain his breathing while under sedation? Could his little body really handle an hour filled with some cocktail of drugs meant to render him inactive for the MRI? Of course, now I know I was overreacting, but that didn’t help me at the time.
Thanks to a wonderful staff of doctors and nurses at Wolfson Children’s Hospital in Jacksonville, Fla., Harrison came through the MRI without complications. After a difficult few days, I was ready to go back to work and reality. My simple wish did not come true.
After just two days back in daycare, Harrison started vomiting during dinner. I was convinced I had fed him too much too fast, so I changed his diaper, put on his jammies and rocked him to sleep. Daddy was out of town for work, but was coming home in just a few hours. It turned out his timing couldn’t have been better.
Harrison cried all night. He was in pain, obviously suffering from nausea and body aches. Again, we carted Harrison off to the pediatrician, to learn he had yet another virus. Saturday evening Harrison’s virus worsened. The pediatrician ordered us to the ER for IV fluids (which can be quite an interesting place on a Saturday evening – please note, our pediatric ER and the regular ER share an entrance and a waiting room). After heading into triage, Harrison was taken to his own little room in the pediatric ER, where he cried inconsolably for two hours straight. The only thing that consoled mommy at that point was learning that Jimmy Johns delivers right to the ER room. No more reheated broccoli and chicken casserole for me (hey, I might not know how to cook, but I sure do know how to eat).
And that’s when it all changed. The Jimmy John’s delivery driver came just as a nurse opened the door to the pediatric ER room across the hall. I caught a glimpse of a young bald girl on an IV. I turned to Harrison and let his wet tears fall all over my shoulder. I cherished every single tear. I listened closely to every single cry. I held him as close as I could. I could be sitting in the room across the hall, watching my child battle cancer. I imagined how often that little girl’s family must visit the hospital. I imagined the pain of watching a little one cry when you don’t know if your baby will still be alive in a few months. I imagined life could be a lot harder than a couple of viruses and a few trips to the ER. Some people may look at me and wonder how I cope with having a child with Down Syndrome. I look at the silver linings, and thank my lucky stars that I have Harrison, who just happens to be the cutest little boy in the world, extra chromosome and all*.
*Disclaimer: I am his mother, so I think Harrison is the cutest little boy in the world. A lot of people do seem to agree 🙂