Jealousy..

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,

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

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.