Perspectives of The Pompe World

A lot of times on this journey, us mothers are the ones who are out loud about everything. We tell the story, connect with others, interact online and are usually the ones sharing things publicly. But let us not forget about the fathers.

They experienced this too. They feel afraid and worry. They sulked with the guilt. They felt the devastation. They lost sleep and felt the pressure. The appointments were hard for them too.

Their child was diagnosed too.

They had unique pressure to stay strong. Kept us level headed. Comforted us. Distracted the kids so we could cry at the kitchen sink while washing dishes. Offered that quick little squeeze of the hand on the drive to bloodwork.

They often get lost in the background when they are very much a key person in the journey.

They live with the fear. They experienced something traumatic.

They need support too.

The tough exterior sometimes tricks me into believing our experience was not the same but it was. I have to remind myself of this at times.

I’m grateful to remember that he was my rock in my darkest days, and then I feel sorrow that those were his darkest days too. It just looked a little different on the outside.

So whether they are the loud and transparent or quiet and reserved kind of dads, I say “let’s hear it for the boys.”

Not every person gets so lucky to have a partner in life and I don’t ever forget that we are one of the lucky ones.