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

Looks can be deceiving..

Listen, I get it! I’m just as guilty with saying, “but they look fine”. However after Mason was first diagnosed, I still constantly questioned if it was true, because well, “he looked fine” most days. I started to realize how many people in this world have Invisible Illnesses, and have people question them constantly. Once this started happening with us, I just knew I had to change the way people see this. That’s how Candid Stripes was born.

As the parent of a child with an invisible illness, day after day, your heart hurts. You hope the world changes and can be more accommodating, to make space in their hearts to just have some empathy. You settle into days where pain is minimal, life seems normal for awhile. You plan all of your outings, and activities, based on what he can handle. Then he wakes up one day, and cant walk. Can’t get himself to the bathroom, can hardly stand without feeling like he can’t support the weight of his tiny body. He falls, he dislocates another joint. Then you’re consumed with worry. Will this one joint stay in place for awhile, or will this happen daily.

A year ago, Mason dislocated his shoulder when he scratched his back. Now every day all day, his shoulders come out of their sockets. It doesn’t phase him anymore. He actually told me today, when I needed some lotion on my back, ” mom why don’t you just do what I do to reach my back?” I told him, “bud, its not typical to dislocate your own shoulders to reach your back. not everyone has that power!” Which of course he thinks is so cool.

I had a friend say to me to help me understand how I was feeling, when we were deep in a flare up. “Its like you’re carrying around a 350 pound weight everyday, but you get used to the weight of it. Then someone points out, a doctor, a pain day, whatever, that you have this giant weight on your back, and all of a sudden its heavy again. It’s all you can feel, and think about. She put it into words so simple, but so big. It does hurt some days to carry around this worry. The fear of what his future looks like.

Some days your heart is carrying something so heavy, its hard to stand. Knowing that his life, we can make it as normal as we possibly can, but the bottom line is, he wont have the same kind of life that his friends and siblings will have.

People, while we know they mean well, because sometimes its so hard to know what to say. They will say ” oh you guys will get through this” or “God will fix him”. We won’t get through this, because there isn’t an end. This never changes, we will have and end to a flare up, and be ready for the next one. God can’t fix someone who isn’t broken.

Mason has so much patience, he’s so happy, and understanding. Willing to understand what his limitations are without a fight. He’s not afraid to sit out, to advocate for his own body. To say “I cant do that, but i can do this instead!” He teaches me without knowing it, how to be a better person. To give more grace, more understanding. To live in the day with what we have at the moment.

Until tomorrow,

Tiffany.