Tonight I donned a haute-couture lead apron at our local emergency x-ray department. I’m not usually togged out in such glamour, but have been known to grace this establishment on more than a few occasions with Julie. It’s an odd dance, the one taken by a parent when a child becomes desperately ill. The child is really the patient … but the parent is definitely part of the equation. It’s so interesting to see first-time parents and remember what we used to be like and how we used to react.
The emergency room parent encounters the most difficulty when their baby or non-verbal child is screeching and screaming. It is often harder for this parent to allay their own fear than that of their child. I’m sure you’ve seen the parent (actually we’ve all been there) who gasps to the triage nurse, “I’m not sure what is wrong.” As the nurse starts to write in the chart they then blurt out something that sounds like, “his tongue’s gone green” … or “I am sure her hands weren’t that pink and purple colour yesterday” …. or even a tearful “I lost the paring knife while I was making the soup … and I’m sure she swallowed it without me noticing!”
When we first started on this road, AJ and I were no different. Our baby may have had multiple medical problems but we were not ready to be her parents and continually flubbed it. We found it difficult to decide what was important and what wasn’t. We missed ear infections, and then took Julie into emergency with nothing more harmful than a stomach ache. We tried our best, but we couldn’t sift important information from the ordinary. We were both horrified and hopeful. We “listened” to the advice, but didn’t really understand many of the medical terms. I suppose it’s no different when you’re learning a new computer program. At first it’s almost impossible to learn, and then you “get it.” The first piece of software is the worst, and then you learn to navigate around almost any program you’re given. After a while you find that you’re becoming more “savvy” and you catch on comparatively quickly. It is the same with being a parent of a kid who has complicated medical issues. And sometimes … to be honest … it’s better to not know what the future holds.
I still remember our fear when we were told that our baby was going to be delivered at 28 weeks. I can’t imagine how scared we would have been if we had been told that Julie would have congenital heart disease … acquire brain damage from the surgery … develop a blood clot … end up with liver disease … develop immune deficiency … and so on and so forth. If that had all been dumped on us right from the start then I can tell you without a doubt that we would have lost our hope. It may sound odd, coming from a parent of a child who has developed such complications, but you really do need to keep a picture in front of you at all times of what you hope for your child. If you can’t do this, then try and surround yourself with people who are there to support you and your child and just keep your heart open.
Twelve years ago someone reached out to support me during a time when I was at risk of losing hope. I was walking forlornly down the hospital corridor one evening, pushing Julie in her baby stroller after having visited emergency yet again. Our little baby who had survived being born at 28 weeks, had then developed further brain damage following open heart surgery. Our trip to the neurologist the week before had been like a nail in our coffin, so to speak. “She’ll never be normal,” he had said. “Just take her home and enjoy her.” Instead, I had cried my eyes out. What parent would enjoy being told that their beautiful, happy baby would never be normal. It was one of the saddest moments of my life. As I wandered despondently down the corridor I saw a nurse who had known me from the antenatal unit. She asked how things were going and I told her. She didn’t know all the “facts” but she sensed my turmoil. Twelve years later I still remember her next words as they burned into my soul. “Just believe,” she said. Simply … “Just believe.” I have never forgotten that moment.
When I was able to finally “hope” again, I changed the world for Julie. Instead of just accepting medical diagnoses I started to reflect on this information. With the support of her wonderful pediatrician I initiated decisions as to when she should have her blood tests, and even had the results faxed to our house so I could get a “feel” for what was happening. As the numbers of physicians involved in her care started to increase (at one point I think she had 14 or 15 physicians and specialists at a time) I found that I became an important part of her care. I was the person who provided the stability and the continuity as I was the only person who was attending all the appointments with her. When I started reading medical journals on the internet to make sure I understood the jargon … interesting thoughts and theories began to materialize.
“Hmmm,” I thought, and prompted an ultrasound technician to check Julie’s liver during a routine kidney ultrasound.
“She seems to be missing some hepatic veins,” she said. “I think I’ll call a doctor!”
That was the start of many more appointments, and also the beginning of new hope for Julie as light was shed on her condition. It was heartbreaking to learn that Julie had tested positive for high amounts of ammonia in her blood, and it was also a big shock to realize that her brain damage had been ongoing and that some of it could have been prevented by better controlling these chemicals. As we explored her conditions, it led to much more knowledge, culminating in a better approach to her care.
Tonight, Julie left emergency with no clear diagnosis. She had many tests and will go back tomorrow for more. In the meantime, she was fussed over by all the important people in her life who love her and who help her to cope. One of these important people is her sister Claire. By combining her endless energy, goofy behavior, and penchant for inventing “on-the-spot” rap music (today she invented a song about a butterfly who forgot to fly and fell out of a tree) she managed to get Julie to calm down. Once Julie was in the examination room and slightly more cheerful, Claire started inventing rude noises with her mouth in honour of “Oglington Fartworthy,” one of Julie’s favorite characters in Nanny McPhee. When she then followed this with “Je m’apelle Stinky” and phrases unlikely to have been picked up in French immersion, Julie actually grinned and chuckled.
Many years have passed since Julie made her first trip to emergency and she is now starting to become her “own person.” As we hold her hands and walk her journey with her, we can only hope that she is able to develop her own sense of hope. Until then, we show her how much she means to our family, help her to be courageous, and encourage her to … “Just believe!”