The Choices I Make Because of My Child's Rare Disease Aren't About You

When I have to cancel plans last minute, it’s not about you.

When I can’t commit to going somewhere because I do not want to impose on the few people who can watch my son, it’s not about you.

When I don’t call to check in or have a delayed response to something important in your life, it’s not about you.

When my son can’t go somewhere or do something with you or others, it’s not about you.

When I take too long to return a call or a text, it’s not about you.

When I am tired, cranky, overwhelmed, angry, or sad, it’s not about you.

When it seems like the rules of what is and isn’t allowed are always changing, it’s not about you.

When I don’t want to leave my son, it’s not about you.

When I can’t do it and need help, it’s not about you.

The day my son was diagnosed with a rare disease, our life was flipped upside down. Our daily lives revolve around his disease and the care of his disease. Everything we do or don’t do is determined by what is safe for him first.  This has been the case for the last four years and while it might not be as critical in the future, it will most likely always be the way we make decisions.

Decision-making is mentally exhausting. Unfortunately, as hard as thinking through all the options and weighing the pros and cons of each decision is on me, it is even more overwhelming for my husband. He tends to be more of an opposite side of the spectrum thinker; something is or isn’t allowed, there is little to no grey. Most of the time I try to find a grey answer to the question — keep my child safe but allow activities that they and others are looking forward to even if they are modified in some ways. Given our different abilities to think things through, a majority of the heavy lifting when it comes to decision-making falls on my shoulders. Not to say he does not assist, but I typically have to consider our options thoroughly and present them to him for a discussion.

I don’t have the energy or mental capacity to play games with people. We don’t make decisions to purposely hurt other people or leave them out. We do not try to avoid people or situations just for the sake of it. We don’t have the energy for those kinds of games. We think first and foremost of our kids, specifically our rare disease warrior. We know that some of our decisions affect others, sometimes in ways we don’t mean or expect. But the reality is, it isn’t about them, it’s about us — or more specifically, it is about him.

Maybe that makes us selfish. I know I have been called that and worse. Having a child whose rare disease will shorten his lifespan means I will do everything I can to keep him healthy and safe, even if people do not understand the choices I make or even if their feelings are inadvertently hurt by the choices I make. I do not set out to hurt other people or to have them affected by what we do and don’t do. But I am a mother, and as a mother, I put my kids first.