I Am Not a Superhero for Raising a Child With Pompe Disease
When asked how she does it all, columnist Keara Engle says, 'I just do!'
Having a child with a rare disease can certainly be challenging at times, but it doesn’t make us superheroes. We’re often called this by people with typical children or no children at all. The truth is that we’re just like everyone else. We don’t have magical superpowers, nor do we have superhuman strength.
When your child is diagnosed with a rare disease, your whole world gets flipped upside down. You have to take things day by day, learn everything you can about the disease, and figure out how to manage it. I quickly discovered this when I gave birth to my now 4-year-old son, Cayden, who has infantile-onset Pompe disease.
On top of that, I was also a single teen mom. While it certainly made things difficult, I know that I’m not the only parent to encounter these challenges. I had to grow up fast, and that’s exactly what I did. Of course, I never expected to have a child with Pompe disease, but that wasn’t going to stop me from being the best mom possible.
Yes, it was hard to watch my child struggle and be hospitalized for months on end. And yes, it was hard to put my baby through surgeries. I get upset when I think about the fact that my child will likely never walk and may depend on his feeding tube for nutrition for quite some time. And it’s a lot to take your child to multiple specialist appointments and therapy sessions. However, you learn to adjust and adapt to this new lifestyle.
Many people think they wouldn’t have the strength or wit to do what I, and other rare disease parents, do every day. But in reality, most people would. Nobody goes into parenthood expecting to watch their child go through unimaginable things, and while it’s hard, we just do it.
That’s something I find myself saying a lot. People constantly ask, “How do you do it all?” My response is simply, “I just do!”
I don’t have a clear-cut answer to that question, and I’m not sure I ever will. All I know is that, even when I learned my son had a rare disease, my love for him never changed. I had no second thoughts about whether I could raise this child. I just knew I would, no matter what challenges we’d face.
I’m just your average, everyday person. Yes, my child requires much more attention and care than a child without a rare disease, but that doesn’t make me superhuman. My son depends on me, and I’ll continue to give him my all until I’m physically incapable of doing so.
Honestly, I’m sure almost anybody in my position would do the same.
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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Valerie
Keara, your article is so beautifully stated. I have an 8 year old grandson who was diagnosed with Pompe Disease at 6 months old, and his mom and dad are remarkable examples of what you wrote about. All of us move forward day by day, always focusing on what he CAN do, and never on what he can't do. There are many amazing opportunities available for children of all abilities - we just have to seek them out. Adaptive sports are some of our favorites. Our grandson loves baseball, skiing and wheelchair basketball. The sky is the limit - we just do things in a different way!