Halloween is my family’s favorite time of year. We go big with costumes and the kid’s anticipation for going door to door is palpable the days before. Unfortunately, this holiday does not skirt by the looming reminder of Pompe Disease.
My daughter is 6 and has mild progressing Pompe Disease. We live our days grateful that she’s able to carry on a normal life and that you don’t always notice the effects of her progression. Sometimes this puts Pompe in the back corner of our minds, though sooner or later it comes to the front. Trick or treating is one of those times. The happy excitement of the festivities becomes a bit complicated by the sinking settle of recognizing that she couldn’t physically keep up.
Endurance is the number one way that we see effects of this disease and always has been. We know that we may need breaks, pace ourselves accordingly, or even cut events short when needed. Often my husband will carry her the rest of the way through, or at public places like amusement parks or the zoo, we rent a stroller. We are grateful that there are options that don’t keep us from enjoying these things as a family, but still it brings some complicated feelings. People don’t always understand when they see an older child using a stroller and an invisible illness may lead people to believe laziness is a factor in the decision to use one. As I’ve met adults with this disease, many times I have heard them describe harsh judgements about the use of assistive devices and equipment and this stays with me. It’s also complicated for her, as she wants to keep up with her brother/friends without the use of one. This year, we tackled trick or treating on foot and I have some guilt that it wasn’t the right call.
My daughter struggled with pace, endurance, and eventually pain. We divided and cut her time short while her dad went ahead with her brother. Our night of excitement and fun ended with some hard feelings about seeing my child struggle and being forced to sit beside the reality of Pompe. While I don’t dare find myself in denial of Pompe, I do try to focus on the gratefulness of mild progression and center myself on having her live a normal physical life like her peers. So many with Pompe don’t have this luxury and I take advantage of the fact that we do. But if there is anything I’ve learned, this disease will continue to be a bit of a black cloud to complicate our endeavors of normalcy.
As I walked her home while the other kids continued on, I felt isolated and angry that such an exciting time for her was also so difficult for her. It’s hard to feel protective of her over something I can’t protect her from. It’s hard for sadness to win me over when I have vowed not to let this take too much of our joy. It’s hard to watch any child struggle with something they don’t deserve to struggle with in the first place. I hope that I can eventually find a mindset where this doesn’t affect my emotions. I hope I won’t feel compelled to explain for her and that I don’t let reminders of this disease take something away from a fun time. I’m spending some time today working through my feelings about this and I thought it best to use my feelings for something productive.
So, I write this one today to remind people find kindness and understanding for invisible illness. I encourage you not to make judgement and opinions about people you see using aids for mobility, no matter their age, size, or outwardly perceived abilities. I implore you to remember that you never know what people are going through, or processing emotionally. There are people who only want to live life fully and this may require some consideration and modification and even that concept is sometimes hard to navigate. Finding a balance with this disease continues to be so much physical and emotional work for those affected by it and some days just feel harder than others. Today, I remind others to meet people where they are.
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