Perspectives of The Pompe World

I’m sorry.

I’m sorry I am not always the mother who takes this in stride. I know that’s what people hope to see. I am aware that my weaker moments make others uncomfortable and bring the mood down. It’s heavy-I get that. But I don’t have the energy to avoid my reality in order to manage someone else’s discomfort. I’m not uncomfortable and you shouldn’t be either.

I’m sorry I don’t make a better attempt at seeming as strong as you’d like to believe I am. But the fact is, I’m no stronger than you. I am just like you.

I’m sorry if it seems like this is all I talk about. It’s such a major part of life now and I don’t want to treat it like the skeleton in the family closet. I want people to know about this so that more people can understand us and so that we can help others. I want my daughter to grow to know this as just another day in the life and not the elephant in the room.

I’m sorry that this isn’t always the feel-good story. Sometimes it’s a stressful pity party. A hot mess with ugly thoughts and unhinged emotion. It has many feel-good moments and feel good days but some days—it’s hard. Some days we are not at our best, just like anyone else.

I’m sorry there isn’t a hero. The pressure to be that hero is a lot. I don’t want her to feel that pressure. I want her to feel whatever organic feelings that come to her and know that they are okay, and valid, and normal. The more we can normalize living with this and take the pressure off of it, the better.

I’m not a hero either. I’m just a human. A mom. I’m no more equipped for this gig than the next person and we are all just doing our best over here. I don’t always feel called to it and don’t have it in me to pretend I do. More than recognition, we need grace. More than praise, we need understanding. More than sympathy, we need just a little extra consideration.

You can be proud and also realistic. You can be optimistic and realistic. The more normal we treat situations like these, the better for the people who live them. I talk freely about this because I want my daughter to be able to do the same without worrying about how it makes anyone else feel. I don’t want her to feel sorry. The more we speak on our hardships, the less hard they become.

So I guess, I’m not actually sorry at all.

And as long as you invite our reality and accept us where we are, you shouldn’t feel sorry either.