Courtesy of Andrea Davis
On June 10, 2010, my son Jake, who was then 3, had a seizure. It was the first one he'd ever had, and it was the first I'd ever seen. My wife, Andrea, and I took him to the E.R., where the doctors were able to sedate him and end the seizure. The next day, after all the tests had been run, we had a diagnosis: neurofibromatosis (NF).
Neurofibromatosis is a complex condition that occurs in about one of every 3,000 to 4,000 people around the world. About half the new cases of NF in the U.S. are the result of a spontaneous genetic mutation; the other half are inherited. The classic symptom of NF is the growth of tumors along nerves. It also causes learning disabilities, bone deformities, seizures, hypertension, growth problems, and vision impairment. When we got the news about Jake, Andrea and I were overwhelmed by our emotions. We were terrified. We were angry. We were confused about what, if anything, we could do to help him. We were depressed and exhausted. But we learned as much as we could and we tried to keep treading water and do the things that seemed most likely to benefit Jake and keep our family afloat.
If your family ever faces a health problem, some of the lessons we've learned along the way may help you.
Do Your Homework
Parents have told me that their doctor gave them a diagnosis and said, "Now, don't go home and look this up." But you'll need to find out about symptoms, treatments, and whether it could happen to someone else in your family. A good doctor will answer much of that for you. Ours sat with us for an hour and a half after the diagnosis, going over all our concerns. But you'll have questions that come in the middle of the night. There's a lot of false information and pseudo science available online, so stick to reputable sources such as hospitals, universities, and government sites.
Call for Backup
After getting a diagnosis you'll probably be in shock. We found it hard to grasp the size and scope of the shadow that had just been cast over our son's life. There was an avalanche of medical bills and visits to doctors and appointments to schedule. But we still needed to prepare meals for Jake and his sisters and get them to school and to parties and keep track of when the oil needed to be changed in the van.
Fortunately, we had people waiting in the wings. When my wife and I told our families what we were dealing with, they nearly battled over who was going to get to watch our kids while we took Jake to the multitude of 'ologists. Their love and help has been invaluable.
But not everyone is as lucky. You might call a few people who love you, will want to know what you're going through, and can support you. It may be your instinct to be superstrong for what lies ahead, but use your strength wisely. Sometimes asking for -- or accepting -- help is terribly difficult. But the people who care about you will want to help. Do them a favor and suggest specific ways they can pitch in.
Find an Organization
It's easy to feel helpless. An illness that attacks your child is like a monster that has invaded your home. By joining an organization and supporting the people who are trying to raise awareness and money for research and treatment, you'll feel like you're getting your hands around the neck of that monster.