Navigating Motherhood with HAE

Being a mom with a chronic illness was not a hat I thought I would ever have to wear. But here I am - a mom with a chronic illness. Not only a chronic illness, but a rare one at that. Accepting this might’ve been harder than accepting the actual diagnosis of hereditary angioedema (HAE). I didn’t know if I would still be able to be the mom they deserve. The mom I want to be. The one who can still do the sports in the backyard with them, or roughhouse like my dad did with me. Did I pass this onto them? Are they going to have to take medications like I do? Are they going to have a “normal life”?

Reflecting on my own mother's journey

I grew up with a chronically ill mom, who also had hereditary angioedema, lupus, and kidney disease. All I remember is how often she was in the hospital. How often she was sick. So when I received the diagnosis of hereditary angioedema, that was all I could imagine.

But this was 20 years ago, really before there was any medication for hereditary angioedema. Now that I have a few years of “personal experience” with this disease, I know that life and being a mom with this disease looks so much different than it did 20 years ago.

What my kids see

My kids are still young - only 7 and 4. So they really don’t “know” about my disease just yet. But they do know that mommy has to take medicines to keep her from getting "sick." I have some really sweet moments caught on camera of my 4-year-old daughter comforting me after doing my preventative shots and putting a Band-Aid on for me. They also know that sometimes I need to have a lazy day because I'm having a flare-up and I need to let my medicine work so I can get back to normal. I don’t believe my disease has had any more effect on them than a “normal” mom being sick sometimes. I haven't ever had a hospital stay (knock on wood), just a few emergency room visits. But I am lucky to have a supportive husband who can jump in when I am not able to do the things I normally do. I’m also so grateful to have family around now who happily watch my kids when I need them to.

Finding strength in unpredictability

Motherhood with chronic illness can be unpredictable and sometimes an incredible inconvenience. Being a mom can be stressful and, of course, stress is a trigger. So you never really know how the day is going to go until the day is over.

But I am happy to report that more often than not, I am the mom I want to be. I am able to do the running around with them that they love. I am still able to do the things I want to do. My experience with motherhood might look different than everyone else's, and some days are hard. But the good, “normal” days make the hard days worth it.