Parents of Children With Rare Diseases Aren't Superheroes

In no time at all, I went from the twins’ mom to the brain surgery twins’ mom. My teen twins were diagnosed with a rare genetic disease called familial cerebral cavernous malformations. They have several lesions throughout their brains that form, grow, and can bleed over time and had surgery to remove a few lesions that were bleeding and threatening their lives and ability to function.

It was one of those moments that completely changes the course of your life. New worries of genetics, headaches, seizures, strokes, paralysis, and brain bleeds. I worried about these things morning, noon, and night. Mostly at night. I spent a lot of time at night doing research. When your child has a rare genetic disease, you won’t find a whole lot of information readily available on the internet. I scoured. I read papers and watched lectures. I threw myself into the rare disease parenting world headfirst. I kept working and researching. Heck, I became the chair of the Arizona Angioma Community Alliance and made it my mission to raise awareness about this disease. Education is key!

Since their diagnosis day, well-wishers and prayer warriors have reached out in droves. At least at first. I smiled politely and tried my best to explain that they won’t get better. Surgery isn’t a cure, it’s a treatment, and quite frankly, I’m sick of saying “well, at least” when it comes to either of my daughters’ health.

One night, after a particularly long day of therapies and scans to prep for another surgery, someone said something that I believe came from the very best intentions. It was a comment meant to be taken as the deepest compliment. Needless to say, I wasn’t (and still am not) in a place to receive this comment the way it was intended. A well-meaning mom from the school said, “I could never be as strong as you if it were my kids. I don’t know how you do it.”

Saying that you just don’t know how we manage or that you wish you could be as strong as we are is kind of a slap in the face. I mean, really. Do you see any other option for us? Do you realize how hard it is for us? Do you think you would somehow be more affected than I am?

If I stop for more than a few seconds to really think about the gravity of my girls’ diagnosis and what that means for us and them, I literally struggle to breathe. Every time I spend more than a few seconds in passing thinking about my girls’ lives and how everything has changed, I feel like my heart is actually breaking into a million pieces in my chest. It is just shy of unbearable.

So, I don’t. I don’t think about it in that way. I think about the appointments, the scans, the meds, the surgeries, the symptoms, and the day-to-day struggles they face. I mother them through these challenges the best way I know how and I don’t think of the rest.

If you were their mother, you would, too. Honest. I’m not a superhero. I’m not better than anyone. I’m not stronger than anyone. I’m a mother with no choice. I don’t get to have a say in any of this. My girls are depending on me to help them learn to navigate adulthood with their diagnoses. I don’t get to fall apart. Believe me, if that were an option, I would have long ago. But mothers, people really, we do what we have to. We put one foot in front of the other and we move forward. I am no different than any other mom on the planet. Promise.

So what can you say instead? “This must be so hard for you and your family. I am so sorry for what you are going through and ready to help any way I can.” And then actually offer a way to help. If you know there is a big surgery day coming, prep a casserole and drop it off instead of reminding them how brave they are.

I don’t see myself as brave. I see myself as a determined mom. I will do anything I can for my children, and falling apart just isn’t an option. Some days, I wish it were.