I don't live that life. Caelen doesn't get to live that life. Once again, even the smallest of colds, aggravates his plastic bronchitis and he's struggling to breathe comfortably.
This is why I'm a germaphobe. I have to be. In order to keep my half hearted immuno compromised child safe, I have to clean, sanitize, wash everything, and constantly keep an eye on what he touches when we're out in public. Think it's fun constantly telling your child, "don't touch that, get that out of your mouth, clean your hands!" How I long to be the mom that let's her kid be normal.
Instead I'm up late again, fighting Caelen's plastic bronchitis because I let my guard down at the grocery store, and let him be a kid. I let him push the cart, I let him touch things because it's summer, and germs aren't as bad in the summer, right? Now here I am, 3 nights in a row, watching him work to breathe, doing nebulizers and chest pt while he sleeps, and waking him to cough up pieces of the casts. Each time his breathing gets better, till the casts form again. All the while, Caelen somehow let's me do all these horrible things to him to try and ease his breathing. He cries, holds his breath, turns blue, and coughs. Then he forgives me. Every time. I tell him that I'm sorry and I love him. And he tells me, "thank you for rescuing me," then falls back asleep to chest percussion. My sweet boy doesn't deserve this.
So for all of those that think I'm crazy for being a germaphobe, or have wondered why I'm so anal about germs and Caelen, walk a mile in my shoes. Then maybe you'll understand that a simple cold will never be simple to Caelen, or other immuno compromised children.
To those who either get it, or don't but pretend to...Thank you. Being able to have a safe group of friends who still invite us, and tell us when someone may be sick, helps us have more of a normal life. We don't want to live in a bubble, we want to be out too, just like the rest of you. So when friends respect Caelen and his health, it gives me peace of mind.
And to all those that have been involved in the recent drama...let it go. At the end of the day, we're all moms to special needs children, and that's where our focus should lie, not on tearing each other down. Germaphobe or not, we need to respect each other.