Maybe you came to my blog today because your child, or yourself was just recently diagnosed. Maybe you suspect it, and want more information. Maybe you’re not new to Ehlers Danlos, but you’re heart is feeling it right now. You’re at a new crossroad with it, and you don’t know where to turn, what to do, and you’re just sad. You’re wanting answers, solutions, anything!
I can tell you that I can not give you any solutions, I can give you some resources, things we have done that has made a difference for him. I can just be a resource, so you don’t feel alone. Let’s be honest, this can be a lonely journey to be on. Sometimes it’s nice to know that there are other parents out there that feel like you, understand what your heart feels like and Understand the limitations.
It’s not the end of life as you know it. It does change a lot of aspects of your life, it does require new ways to have family fun days. It does mean you worry a lot more than you did before. It changes your heart, for the better. You learn empathy in a way you have never understood it before. It helps you prioritize the important things. How to plan your day to best suit your family. You get more chances to calm down, to spend quality time together. More snuggles, you connect more, because you have to slow down.
You learn to appreciate the good days, the days where you hear the laughter, the joy and see them enjoying life like every other kid! You get to swim more, because it’s an activity that is impact free, and helps with muscles. Also lots of family movie nights!
Ehlers danlos isn’t the end of the world, it forces you to just make changes. To appreciate the people you have in your life that understand, or try to understand. Who listen on the bad days. Who make changes in their life to make room for Ehlers Danlos.
I’m not going to say it’s easy. I’m not going to downplay the hard days, because when it’s hard, it’s so deeply heartbreaking. I wish that I could take all the hard days from him, and have them for myself. Since that isn’t possible, I do everything I can to make his bad days easier. To simply love him harder, to carry him when he can’t stand. To make sure he knows we would go to the ends of the earth to help him. Also to advocate for him, and everyone with Ehlers Danlos. Those bad days though, they really make you thankful for the good days. They help you appreciate your other children. How their hearts make room to love him more on those days. To help him, to be there. Even with simple things. It’s showing them how every person is different, and that sometimes you can’t see other peoples struggles with your eyes, but if you pay enough attention you can feel it with your heart.
Ehlers Danlos Syndrome is not easy, it’s not for the faint of heart, watching your childs joints dislocate is something I can’t describe, but he’s here. He’s amazing, he’s incredibly strong. He loves with his whole heart, and he doesn’t feel like he is missing out. It’s easy for people to say that he “needs to be a kid”. They just don’t understand he is being a kid, in the only way his body will allow him to be. He feels included, happy, loved, and most of all like he is not missing out on anything.
It’s going to be ok..