“Breaking” The News of Pompe Disease to Small Children

How am I going to tell them?

It’s something I’ve wrestled with since the day my youngest was diagnosed. Her brother was only 2 years old then. How would I make a two year old understand what was happening inside his baby sister’s body? How could I explain it in a way that he understands without making him feel afraid?

I honestly couldn’t. So I didn’t—not really.

He’s 5 now and as we have grown as a family, I’ve found age appropriate ways to explain things, but I’m still not always sure that he understands. I’ve told him that we are all born different, and that just like eye color and hair type, his sister was born different. I’ve told him that her muscles won’t be quite as strong as his and that lots of doctors will keep a close eye on her as she grows.

I still have a nagging anxiety about “dropping the news” but because of his age, it doesn’t come to him in the way it came to us as her parents. It hasn’t caught him off guard or devastated him. He’s been able to digest general aspects gradually and he has taken it all in stride. Regardless of how well he’s done, I still find myself unsettled with it all.

Recently, I was preparing his sister for her upcoming echocardiogram. I show her videos and photos of a dear friend receiving her echocardiogram so that she remembers what to expect. He was interested in the conversation and asked “when do I get that?” I felt so unprepared for his question. I reminded him that his sister was born different and that he won’t need to have that same test because he’s different from her. I think that the conversation went well but I still hated how unprepared I felt. I later learned that I would have to take him with us to her appointment.

He had never been to an appointment before and I was so worried with how we would all get through it. I felt nervous for the questions he would ask. I felt worried that he may become fearful or anxious for his sister. I just felt incredibly low in confidence. But when he learned he would be going, he told his sister “I can hold your hand if you want!”

And he did.

He was patient, and he watched closely. He asked her if it hurt or if it tickled. They were both so brave and I felt my anxiety melt away.

I worry myself sick with how they’ll receive this information or how they’ll feel. I worry with how much they understand or saying something that causes them to be afraid. But at the end of the day, they don’t receive this news like we did. They rely on what they see and how the world feels around them and they accept these differences in our worlds with grace. This grace truly reminds me that it’s all going to be okay.

Simplify your answers. Include them where you can. Set the stage and do your best. Also, ask other parents. Their encouragement and advice carry me through the ripples each and every time.

But if you’re like me, and you’re allowing the unknowns and unpreparedness to bring you fear, just look at your small children. Time and time again, they’ll show you true bravery and resilience. I hope and strive to be more like them.

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