Its a rainy monday morning and I’m enjoying my cup of hot coffee! Mondays are usually harder days for us. If we have done something over the weekend, it typically means Mason has a pain day. As I’m typing this he just crawled into the kitchen because he can’t stand this morning.
Over the weekend we went to a friends party, they had a big inflatable slip and slide. Typically we would avoid things like this, but Mason wanted to go on it so badly. We eventually agreed, knowing that would mean at least one full day of pain for him. Sure enough, we are on day two of pain, and today he is barely able to stand.
Honestly, I get jealous of the other parents who without any hesitation can let their kid on the slip and slide. They don’t have to worry about what the next few days will be like, because they enjoyed themselves with all of the other kids. I get a little jealous of the parents that can drop their kids off at friends houses, and don’t have to give a whole run down of their child’s medical condition. Hoping that they don’t secretly think “oh man, this will be the last time he can come over!” I get a little jealous of parents who can send their kids to birthday parties without fear. Fear that its going to be crowded, he will get knocked down, they will have a trampoline, and he will have to sit out while his friends get on. That he will get invited to parties at inflatable places, at trampolines places and he won’t be able to go. Jealous that field day at school, they have bounce houses, and you can send your kid and not worry. While I have to talk to my kid for days and remind of why he can not get on and jump, even when his friends are. How important it is for his body to not do it. How heartbreaking that feels to make him sit out.
Don’t misunderstand, I am so happy for them, that they don’t have to worry about these things. I just get sad sometimes, that we do. Sad some days that our younger two also miss out on some of these things, because it just wouldn’t be fair to take them (if its a family trip) to these places and leave him out. That maybe doesn’t sound fair, but we are a family, and we have to take care of each other.
We worry about field trips, we know a day at the zoo will more than likely mean a day of pain. While pain is OK, it never feels good to see your child hurt. While also knowing that he hurts because he had fun. He hurts because we planned a day out so we could do activities, and the next day he lays down most of the day. It never feels easier on your heart. It seems unfair, that all I want to do is protect him, but give him the freedom to do things, and go places, but that in return this is how it feels after.
I’m so incredibly thankful for the friends that he has. Most of them, while they may not understand EDS, they accommodate for Mason. His friends parents, all still willingly let him come over, and they make me feel at ease leaving him there for a few hours.
We make a very big effort, to make sure Mason does not see the things he can NOT do, but the things he CAN do. Some days that’s hard because, we still have to say no to things way more times than we would like.
I’m so thankful, that we know early what EDS is, and what it means. I’m so thankful that we are able to take the precautions now, to make it so hopefully as he becomes bigger, we ease some of his pain by making accommodations. Although, some days that doesn’t always make your heart feel better.
With a heavy heart,