How to manage the emotional and logistical challenges of having a child with a serious condition -- from a dad who's been there.
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.
Check Your Priorities
Having a reason to think long and hard about the true focus of your life is one of the fringe benefits of having a child with health problems. Take a second and appreciate that. When Jake was diagnosed, I made a list of three categories: 1) things that matter, 2) things that only matter because they support the things that matter, and 3) things that don't matter.
Come up with your own list. Most likely, the first category will consist of your family. The second will probably be things like your job and your faith. The third will depend on your situation. You may choose to give up the book club. Someone else may decide to change the label on the piggy bank from "vacation" to "doctor." The guest room may become a therapy room.
Watch Both Sides of the Scales
A health condition will impact everyone in the family. Be careful not to become so focused on one child that the needs of another child and your spouse (or yourself) go unmet.
There may be times when your sick child will require all of your attention. When that time passes, try to put things back into balance by spending extra time with your other children. Each moment on its own can't be balanced, but if you rack up enough moments, it all starts to even out.
Errand-running is great for getting some extra time with a well child: The chores will get done and you'll enjoy a little bit of together time.
Keeping track of bills, instructions from multiple doctors, and all the appointments will drive you crazy if you don't gather it all into one spot. So buy a three-ring binder and a three-hole punch. When you get test results or a doctor's bill, put it in the binder. When you read a helpful article or think of a question you'd like to ask the doctor, put it in the binder. Take it all with you to every appointment. While you're waiting for the doctor, you can review what happened during the last visit. Take notes during this one and put them in the binder.
The portability of the binder will be useful, but you'll also want a file box or something similar at home. When you've paid a bill, move it from the binder into the file. Or you may feel more comfortable going electronic. Note-taking and information-storage smartphone apps such as Evernote can organize scanned paperwork.
Play the "What If" Game
Run through the possibilities of what this new diagnosis might do to your child and to your family as a whole, and try to get down to the three or four most likely scenarios. It may be painful to think about some of them, but it's important to give thought to what you'll do if you're faced with them.
Of course nothing ever goes exactly according to plan. So reevaluate things occasionally and make changes when needed. A year ago, Andrea and I were thinking we'd hold Jake back a grade in school. But he's done really well this year. So we changed the plan.
You're going to be faced with much uncertainty as you go forward. Life is like that, whether your child has a heavy diagnosis or not. A diagnosis just gives you a sense that the path before you may have a steeper pitch to it. It's going to take sacrifice and work and a ton of love to get you and your family up the hill. But it can be done. People you know have done it. You can do it too.
Originally published in the April 2014 issue of PARENTS magazine.
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