There is an old saying in medicine “when you hear hoof beats, think of horses not zebras”. But what if you’re the one zebra in a herd of 50,000? Say hello to my son, the zebra. He is three and a half and has a condition known as Common Variable Immune Deficiency.
Essentially, the instructions that make an immune system were just left out of his genetic blueprints. He undergoes treatment every week to replace it, but even so he is sick nearly constantly. Everyone in the pediatrics ward is on a first name basis with me and my family. We’re there anywhere between one and three days a week. But even when home, my wife and I spend a lot of time disinfecting the house.
It’s not exactly a lifestyle conducive to friendships. In the beginning, everyone offered well-intentioned advice: “Don’t give up on a miracle from modern medicine or God”, “There is always light at the end of the tunnel” and my favorite, “Remember, this too shall pass.”
But friendships melt away when I explain that this won’t pass for my son, that it will kill him. Yes, it will eventually pass for me; statistically speaking, as zebras of this breed have an average life expectancy of 42.
People disappear when you tell them that a miracle from modern medicine will need to come in the form of reprogramming his DNA or a complete bone marrow transplant. The former is a fairy tale and the latter has about a 90% fail rate and means a greatly diminished quality of life for those unfortunate enough to survive it.
Zebras know a truth, unfathomable to most, which is that sometimes there truly is no light at the end of the tunnel, nor will there ever be. The lesson that my zebra has taught me is that if it’s only going to get worse from here, then the best moment of our lives is now.
When I am lying with him in the hospital bed, I do everything I can to be with him completely. I feel his heartbeat, and I watch the particles in the air move when he breathes. When I do this, the tunnel vanishes all together and we become immensely alive, for this moment and not any other.
With a Perspective, I’m Aaron Foppe.
Aaron Foppe is a salesman. He lives in Santa Rosa.