I posted on Facebook page last month the news that one of my daughter’s doctors was no longer in practice. We not only lost a beloved doctor, but it also presented a logistical nightmare for our family to maneuver.
We live two and half hours away from a children’s hospital. Many families can live in a rural area and care for their children’s health without trouble. If your child has developmental or health needs, it’s difficult. The doctor we lost last month was the only specialist my daughter could see locally. With nine specialists wanting to follow Martha’s care, having one that didn’t take a whole day out of our schedule was a luxury.
I had a breaking point last year after an appointment. The two oldest boys needed to spend the night at a grandparent’s house in order for them to get to school. I made the 2.5 hour drive with Martha and my 5 year old. Martha cried in the car while she tried to eat Cheerios out of a plastic baggie, and I handed toys back to her the best I could. My 5 year old, while tolerant of the long drive and crying sister, wasn’t old enough to be helpful. My husband had his own scheduling conflicts and was working morning to night.
Martha had an EEG at the hospital, with Michael in tow, followed by an appointment with the neurologist. Once over, we bolted out the door to miss rush hour in the city, and started for the drive home, handing chicken nuggets and french fries to Martha in the backseat while driving on the freeway. I had to hire a babysitter to meet my other boys off the school bus, and got home in time for the kids to ask what was for dinner.
These days are hard and exhausting. I don’t enjoy the challenge, and wish it was easier. That night, after making frozen pizza and snapping at the kids because of my short fuse, I was done. Not only was I tired, but I had been told at the neurology appointment that they wanted Martha to come down again, except this time for a 24-hour EEG. And I didn’t know how I was going to pull it off. Five months later, and I’m still pushing the procedure back. What might be far simpler for a family living closer reduces me to a totally overwhelmed state.
Because of the transportation difficulties, Martha doesn’t get the best care. Specialists that want to see her every four months get pushed to yearly follow-ups. Recommendations for specialized speech or physical therapy seem out of reach, because making the drive weekly, while managing a life at home, becomes unsustainable. And my daughter is the one to get the short end.
Like most challenges, we try to adopt an attitude of peaceful resignation. There will be difficulties. Roll your sleeves up, tackle the project at hand, and keep reaching out until you find your village.
Martha will survive without a hearing test every four months. I wish I could do more for her, and when my children get older, it will get easier.
After our doctor left last month, I was working with a nurse coordinator to find a new doctor. I was dragging my heels knowing the extra effort we’d need to put in. The nurse was encouraging. But she also shared that many families just can’t manage the drive, plus work and other children, which is why doctors try to serve our area. While I delay less urgent appointments, other families have to put everything on hold. Not by choice, but because parents and caregivers can only do so much before they’ve exhausted all resources. We have two working vehicles, some don’t. My job is very flexible. Others risk losing their job for missed work.
When Martha was a baby we’d travel with a suction machine, and pull over frequently to prevent her from choking on her own vomit. We had a cooler full of ice packs and feeding tube formula, syringes, and medications. Hours from home, we’d wipe her down with wet wipes and restroom paper towels, trying to get the smell out of her hair. Looking back, today is certainly an easier time to travel. But it’s still travel, and it’s frequent. My kids aren’t old enough to be left alone.
There isn’t an easy solution other than to just do it, and keep on keeping on. And when this chapter in life has passed, it’ll be clear how to pay it forward.