My son was born with what would eventually be diagnosed as a chiari malformation, a congenital brain defect that can lead to a host of developmental concerns. From the time we started down the path toward diagnosis until at least two years after the surgery that made space for the flow of cerebrospinal fluid through his nervous system, I woke up and went to bed with his health, his safety, his future and his possibilities on my mind. What would life look like for him? What would life look life for my family? During the day, this worry sat in the driver’s seat of my brain. But as a father, I couldn’t let it take the wheel – there was work to do, bills to pay, and I felt like I had to be an anchor for my wife’s emotional needs. Soon we had a second child and I knew that I couldn’t let my worry for my son make me distant from my healthy daughter.
The dynamics of your relationships and the mechanics of your life are sure to be different than mine, but here is what I hear overwhelmingly from fathers of chronically ill children: we push our worries down deep so that we are functional for the family that desperately needs us.
I know a father who had his ill child very young. He’s a tile setter who knows his child’s condition better than any surgeon in the country and has learned to convey complex medical information on the fly to emergency personnel who need the full picture in order to make correct life-or-death decisions. His daughter is alive today because of his deep knowledge and careful care.
I know another father who is underemployed in an IT position but chooses to stay rather than risk changing his son’s health benefits and being forced to switch from the team of providers that have come to know his son’s condition. His wife is no longer part of the picture and so he cobbles together care while he is at work and then takes over the second he walks in the door. For this single father, restful weekends don’t exist.
It’s not easy, but we do what is right for our ill children. We do it because we love them and because we can’t imagine what it would be like to not love them. Often, we don’t get the support we need because we are the support that keeps the whole system afloat. This week on Father’s Day, at least take a second to congratulate yourself. You are doing the best you can. And for that, you are a hero.
Garth Sundem is a parent, husband, and author of books including “Real Real Kids, Real Stories, Real Change”.
