It’s going to be ok..

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..

Tiffany

“It makes me special..”

A few nights ago Mason came out of his room, after I tucked him into bed. He wanted to talk, just us in the quiet, after everyone else had gone to bed. This doesn’t happen often, because he’s a kid of very few words, especially words that aren’t related to Minecraft or Roblox! I relished in the fact that he wanted to chat. We sat together and talked about all sorts of things. He told me all about his dreams for his life, and the jobs he wanted to have. We talked in detail about the house he wanted to have, and the amount of children he hoped him and his spouse would have one day. I loved hearing his little mind work, all the things he thinks about. He also reassured me that he “would never put us in a senior center, he would take care of us!” I had no idea he even knew anything about those parts of life!

Then he said “Mom, its ok that I have Ehlers Danlos Syndrome, it makes me special, and I like that!” I squeezed him so tight, and told him how special we all truly think he is. Then he said ” Mom, will I get worse..?” I wasn’t sure what to say, other than I just don’t know. “Mom I just remember when I used to be able to run really fast, so fast that it was hard to see me. Now I can only run at a slow jog. I was just wondering if one day I won’t be able to run at all?”

I sat their in shock. My heart was hurting. I told him I wasn’t sure, that I hope he can always find a way to do the things he loves, and wants to do. That we loved him, whether he could run super fast or not. “mom, its ok if I can’t run, at least I got to run fast when I was little.”

To have that kind of outlook, to be that thankful for the things he has done, and has been able to do. He is just thankful to be able to still do the things he loves, whether it’s quickly or not.

That’s the thing about Ehlers Danlos Syndrome, there aren’t any answers. There are so many questions, so many unknowns. You have to constantly guess, worry, and hope that you are making the right choices. In the mind of Mason, it seems so simple. He’s special, and even if he can’t do the things he once did, he at least got to do them before.

Some days, I feel like I’m so heartbroken, and wish I could change everything for him. Now though, Im trying to remind myself of the things he can do, the things he has gotten to do, even if he can’t continue to do them. He’s a wonderful, smart, kind and caring kid. He has the most gentle little soul. He isn’t Ehlers Danlos, he’s special because he has Ehlers Danlos.

With Love,

Tiffany

our journey to a diagnosis..

Mason had tibial torsion surgery when he was four. They cut the bones in both ankles and turned the bones, plates and screws were placed to hold them together. He wasn’t allowed to put any weight on his feet for 4 weeks. After four weeks, they took off the casts, and put him in walking boots. A typical child should have been able to walk normally still, even after 4 weeks of not. We noticed he couldn’t walk very well. He had pain, low grade fevers and Poor control of his legs. Four weeks later we realized he wasn’t getting much better. We started physical therapy and saw multiple specialists over the course of a year. All of which knew something was not right. We made our way to genetics, after our amazing orthopedic doctor at Akron Childrens hospital referred us. After a few weeks of testing, he was officially diagnosed with Ehlers Danlos Syndrome, classical type 1 with hypermobility, with a few other things. We had no clue what it was, what it meant, or even what to do.

A little back story.. Mason was 4, my daughter Sydney was 2, and I had just gone through a miscarriage. I felt like our world was falling apart. Mason was having problems, that led us to have him evaluated and diagnosed with sensory processing disorder. Our daughter had had tubes put in her ears, then tonsils and adenoids removed, and she became an extreme picky eater. Then this diagnosis came. While I was so relieved to have an answer, it didn’t really feel like one. I still had no idea what to expect, or how to even begin understanding what this means. No one had answers as to what to do, what it would look for him as he got older. We were lost.

I started reading everything I could. Reading studies, joining groups for people with EDS. To say it became scarier when I did that, would be an understatement. I learned that every single case of EDS is different for every person. There are so many variations of “normal” for this disease. I’m so thankful I have these resources to go to when we need it.

From there we needed to be proactive. Protect his joints, give him the space he needs to speak up when hes in pain. Its been over 3 years since he was officially diagnosed. Each growth spurt brings new challenges, new accomodations, more doctors appointments.

Parents- if you feel like your child has any symptoms of EDS, please research, take it to your doctor, demand to be taken seriously. If they don’t, find a new one. Moms, we know when something isn’t right. Trust yourself and your instincts. The sooner a diagnosis happens, the more prepared you can be, the more proactive you can be on protecting their joints.

I’m here for any questions, and concerns, or just send me a message to talk, vent whatever. I see you, and I understand what you’re going through. Even if its not EDS related, and its special needs parenting, I’m here.

Until Tomorrow..

Tiffany