Effects on parents when a child has a rare disease
In October 2011, author Emily Rapp wrote an outstanding essay on life as a rare disease parent and her experience of raising her son, Ronan, under the shadow of Tay Sachs disease for the New York Times. “How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?” she asked the readers. “Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.”
I read this article, titled “Notes from a Dragon Mom”, tearfully clutching onto my baby son, still unaware of the rare disease news bomb that would drop into our lives with his diagnosis of Duchenne Muscular Dystrophy seven months after I read that piece. Once the dust from the diagnosis began to settle, it was one of the first pieces of writing I went back to consult. It was a harsh but extremely relatable picture of a world which I had viewed through a window and now found myself inhabiting. The world of rare disease parenting.
It is every parent’s natural instinct to protect our children. This is why we take vitamins during pregnancy, stay away from substances that could harm them as they grow inside us and choose everything they consume with care. So to find out that your child has a rare condition, one that is often without any treatment or cure, is devastating beyond words. It was on the day of my son’s diagnosis that I experienced for the first time the real sensations behind the phrase of your world falling apart. All the dreams and hopes I had for my child, the plans, goals and milestones fell to pieces before my eyes as I sat in the doctor’s office.
One of my first and overwhelming emotions was that I had failed. I was his mother. I was supposed to have kept him safe. But I had not seen this coming. I had not been able to save him from the monster, because the monster I was looking out for was outside the door, when the one that snuck into our lives lurked in his DNA, unseen.
There is no way to sugar-coat the reality of being a rare disease parent. It is hard, stressful and often heartbreaking. People will often tell us that we are heroes, that they do not know how we do it. They tell us they cannot imagine being in our shoes. When you are walking this path, almost none of it feels very heroic, so such words offer little comfort. There are times when I think that this is not what I signed up for. Then I remember I wanted to be a parent, and there is no multiple choice questionnaire allowing you to specify what type of parent you get to be. And so, some of us come out the other end as rare disease parents.
But parenting in our shoes comes with rewards that only we can see - the smile of our child, a small gesture of recognition, a cuddle when they are peaceful, a bite of food they would not eat. A hug, a touch and a kiss. Our benchmark for what matters is much lower than that of other parents. And even if you are the most positive person in the world, it goes without saying that being a rare disease parent takes a toll. Existing under a constant level of varying degrees of stress is exhausting. Juggling so much information, deciding on what course of therapy to pursue and trying to make a decision in a field where there are still major gaps of knowledge feels like a game of chess in the dark with your hands tied behind your back as someone soundlessly moves the entire chess board around the room. You find that one thing works, only for another unforeseen problem to pop up, like Alice in Wonderland drinking a potion to shrink down and pass through a tiny locked door, only to discover that she left the key out of reach and is now too small to reach the key and unlock the door in the first place.
Each person finds their own strategy to cope with this arena - the important thing to remember is to find some way to cope. This can either be formal therapy, or making a little time to talk to a trusted friend. Choose a healthy method that works for you, as long as you do take steps to do something rather than avoid the obvious health impact that this process will have on you if you leave it unaddressed.
Gentle exercise is also a good way to cope - if you cannot afford or access yoga classes, try to make a little time to follow some routines on YouTube in your own home. Eat well, rest as needed and ask for help. Pay for help if you must, but give yourself some space to breathe. By our nature, parents tend to ignore their own needs, and this is especially true for mothers. But, while you are looking at which wheelchair to buy your child, keep in mind that the most useful pieces of equipment that will accompany you on this process are your body and your mind. So take a little time to treat them as you would any valuable piece of equipment. Take care of them, maintain them and use them carefully.
The rare disease parent club is one that no one wants to join, which comes with a lifetime membership. It is like a boat without sails that has been set adrift. But it comes with moments that shine through the darkness and remind us to hold on to the truly precious things in life and let everything else go. We are adrift in an unknown sea, but if we look, from time to time we see dolphins, beautiful shades of the sea and tiny shining creatures that light up our darkest nights.
As Emily Rapp puts it in the conclusion of her essay: “Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.”
About the author: Omaira Gill is a journalist living and working in Athens (Greece), where she is raising her family. Her older son was diagnosed with Duchenne muscular dystrophy in 2012.
