I hate paperwork. I am naturally unorganized. I start forms and give up by the seventh line. And I pick up the form again and give up. I’ve found a way to organize most of Eve’s life out of pure necessity, but it does not come easily. Paperwork is the only reason I wonder if I was really supposed to parent a child with complex medical needs. I am kidding, but really, this is an area of constant challenge for me.
Today, I conquered the task I was dreading; a trip to the medical records at our local children’s hospital. Our trip to see a specialist in Aicardi-Goutieres syndrome is quickly approaching and I need to send all our records to them prior to the appointment. We also needed to draw some labs from Eve for two different doctor’s appointments. Thankfully I met the most helpful and patient person at the office and in record time, I had all of Eve’s medical records ready to go.
Eve loves going to the hospital. That’s a good thing because we go often. Most of our specialists are there, we do all our labs and tests there. And we also have the rare, unfortunate visit to ER or hospital. For some reason, she loves this place. Maybe she knows the privilege of medical care that she lacked for so long. Or maybe she has the best doctors who hold her hand as we chat about her. This girl loves it when all eyes are on her.
I often think of the lengths that parents go to find the specialists for their children. We will drive many hours crossing state lines because that’s where our specialist is. Others fly to other countries even to get the care they hope will be the solution. When it comes to our babies, ain’t no mountain high enough. If we can just improve their quality of life, ain’t no valley low enough. If we could just have more time…ain’t no river wide enough. Like the song, nothing stands in the way if we know there is a possibility of answers.
That song played in my head today as I read through the medical reports and re-lived our toughest days over the last three years. I remembered details that I had forgotten about or most likely I had pushed aside. The start of the seizures, the start of involuntary movements, swallowing difficulties and loss of skills that only came with hard work. And I knew I would fight this as much as Eve is fighting. Ain’t no mountain high enough, sweet Eve. Together, we will give this our best fight.
We are anxious, excited, nervous, blessed, thankful to be going to see this specialist. We have a long list of questions started and we will come up with even more I am sure. We try to keep our expectations low but as always, we dream big dreams for Eve. She has come too far to start fading away now.