Pectus Excavatum

Both of my boys who I gave birth to have pectus excavatum.
I don’t know why.
Every time I really give it thought, I cry. I know it isn’t the worst thing. I know it isn’t a terminal illness and I know they are still generally healthy and I have so much to be grateful for.
But it’s really hard as a mom. I’m just saying.
The doctors say it was always there and we just didn’t know until they hit a massive and rapid growth spurt. I look back at pictures of them at the beach or the pool. And it wasn’t there.

And then suddenly it was.

I have wondered if it’s due to some failure on my part. I’ve wondered if I didn’t feed them properly and then I’d think of all the kids who survive on goldfish or rice or McDonald’s and they don’t have this. I’ve wondered if I should have given them certain vitamins every day without ever stopping and then I talked to moms who never even gave their kids vitamins ever, and their kids don’t have this.

Sometimes I wonder if they weren’t so thin, maybe it would still be there and we just wouldn’t know because we wouldn’t be able to see it.
I don’t know why they’re what some would call “painfully thin”

and there’s nothing I can do about it.

They are strong, capable, healthy, good looking young men. They are beautiful and I am so proud to be their mom.

People say “drink protein drinks” or “just eat more” or countless other words they think are helpful and easy, as if it’s our fault and we’re just not doing something that we should be doing.

But it isn’t that easy.

I know people in general don’t think about it or don’t think it could be an issue. I know people in general feel it’s ok to make remarks about “skinny people” and think it’s ok to make jokes about them or body shame them in ways they find unacceptable to speak to or speak about people who are considered overweight. From a female perspective, if I made snide remarks about women larger than me, or spoke about how great it is to be a smaller size as a woman, claiming “because that’s what’s truly attractive,” it would be considered rude and mean. I would never do that and I don’t believe that’s true. However when a woman larger than me says how great it is to be that size because they’d never want to be thin, and being larger is what’s truly attractive, those words are accepted and often times applauded, even encouraged with statements or quotes “supporting” this angle. I think both are unkind and I would not agree that either is okay because they are both insensitive and hurtful. Obviously not everyone does this but it’s true that there’s an insensitivity that abounds and it’s not fair. It doesn’t hurt my feelings, I don’t consider myself painfully thin and I love my body; my mom told me very early on and quite often, life isn’t fair. I’m just calling attention to it because there can in fact be a struggle for every body type: male, female, or non-binary, and no one body is better than another.

And no one that I’ve seen with pectus excavatum is a larger size, giving validity and a different truth to the phrase “skinny problems.”

Anyway. There are so many things we worry about as mothers, when it comes to our children. I have all the same worries as anyone else and I also worry that every time my kids do any physical activity, including I don’t know … breathing … they will hurt themselves, and not in the usual way that we don’t want them to fall down and get hurt. I worry that their chest condition leaves them compromised. That they won’t have enough room for their lungs to expand. That any pain in their chest is related to this condition and maybe their heart doesn’t have enough room and cannot pump efficiently. These are not ideas in my imagination, these are things that happen with pectus excavatum.

When my son says his chest hurts, I can’t brush it off.

When my son says his chest hurts, I can’t just give him an antacid and put it out of my mind.

When my son says his chest hurts, all the blood seems to drain out of my body.

Today I am taking my second son for his chest X-ray and I’m scared. We won’t know anything today because they will send the results to the doctor and we will go from there as to whether or not we need to take that trip to the Children’s Hospital like I did with his brother. But I’m still experiencing anxiety and fear.
I know logically that everything is going to be okay and that things could be worse and that I have so much to be grateful for.

And I am grateful.

But I’m also feeling the heavy weight of when we are made to face things that overwhelm us, and we have to put on our brave mom face and use our brave mom voice when on the inside we are crying and just wishing a miracle could heal everything and that we could sit in the arms of someone who loves us who can say to me what my brave mom voice knows is absolutely true when it says to my children:

“it’s going to be okay”

and

“you’re not alone in this”

and

“I’ve got you. Always. No matter what.”