We have the luxury, or the hindrance, of having one of the best children’s hospitals within an hour’s drive. The good news is that we have some of the best doctors in the world that are able to work with our 6-year-old daughter. The bad news is that everyone else in the world wants to work with those doctors, too.
When we are told by our doctors that our little girl—diagnosed at age 5 with Aicardi Goutières Syndrome, which causes her brain to atrophy—needs to be seen again in three months, but that they book appointments six to seven months out, I am beyond frustrated. Too often, we are playing a waiting game, whether for appointments or information.
The most painful example of this was when one doctor on our medical team had figured out what rare neurological disease was rapidly taking away my daughter’s life. But it would be more than three months until we received the long-awaited diagnosis. Because first the doctor went on vacation, then he wasn’t able to get the whole medical team assembled. Through all of this I repeatedly left messages with the office staff and nurses, once breaking down in tears over the phone. It was an excruciating wait on the heels of a five-year search for answers, during which we ran test after test, saw dozens of specialists, and researched every possibility online.
Post-diagnosis, my daughter’s medical appointments still present their own set of challenges. With nine medical specialists (neurologist, orthopedist, gastroenterologist and palliative care doctor, among others) to see at least every six months, if not every three months, I have to dedicate about one day a week to medical appointments. All this practically require the work of a full-time professional scheduler—if only we had that luxury.
Driving to and from appointments, dealing with public parking in a large city with a child who uses a wheelchair, not to mention drivers that really don’t follow traffic laws… well you get the idea. On average, each appointment takes anywhere from four to six hours between the time we leave home and the time we return. My husband and I try to keep the family schedule moving along as smoothly as possible so that on the days with medical appointments, it’s a constant juggling act getting my other two children after school care and to their various activities.
Since I have to dedicate one a day week to medical appointments, I am unable to work full-time. Thankfully my husband is able to carry the medical insurance that we so desperately need, which allows me the luxury of working part-time. I am a college instructor and build my schedule around the medical needs of my daughter—teaching courses at night and early in the morning.
On our medical journey, we have met many types of doctors. They are all very good at what they do, from a medical perspective. Some have gotten to know our family—especially my daughter—very well and have developed a relationship with us. Others have been more aloof. I can remember how our original neurologist delivered the most devastating news a parent could ever hear: not only would our daughter never walk, talk or see, her condition would also progressively worsen.
His voice was hesitant, and he was unable to look us in the eye. I vaguely remember his hospital pager going off, signaling to us this appointment was over. Our doctor had no plans of action or goals for us. It was my husband who literally and figuratively picked me up of the floor that day. We were left to our own devices, and after that visit, too. There would be no social worker checking in on us.
I have broken down in doctor’s offices when they discuss with other colleagues her list of disabilities. It sounds so horrifying to hear it being discussed—sometimes with a medical resident who has never seen anything like this before. More often than not, they are uncomfortable dealing with this emotional mother who sometimes cannot hide the pain of raising a severely disabled child with a terminal condition. I want them to see and feel the pain that comes with this, but I also want them to see my beautiful little girl who has the perfect little mouth and nose and know that she defies the odds every day. I want them to look me in the eye and not be so focused on their computer and not to be afraid to hold my daughter and talk to her like another human being.
For the most part I am able to handle the medical side of things for my daughter very professionally. I am always respectful and well-spoken when dealing with members of her treatment team, but every once in while my emotions come to the surface. I want my daughter’s team to put away their medical hats and fancy degrees and just let us know that they see what we’re all up against—the logistics of this, yes, but moreover the pain of it—and reassure us that we’re not alone in this fight.
