“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

One week in..

It’s been a bit since I have written. It’s been such a long two weeks. Mason was deep into a flare up, and we were getting worried. It was the longest flare up he has had. He wouldn’t walk, he was very quiet and very calm. Mason typically is a fidgety kid. He has sensory processing disorder, and he is sensory seeking a lot. Usually one of the first signs for a flare up, is calmness. He will sit very still and doesn’t have a lot to say. It also helps us see when a flare up is on it’s way out. He will start to get up, move around, and be a bit more fidgety. I never thought I would be excited to see one of my kids fidgety and loud! ha.

Last week, on Thursday, he got hinged AFO braces! He was so excited to get them. He picked out an awesome “digital camo” print, orange straps, and a picture of scooby doo on the back of each. (He has never watched scooby doo, he says it’s only because he loves dogs so much!) We found some awesome shoes that said they would fit AFO braces. We were set, and ready to see how much they changed his life!

Brace day came, he was still not walking much due to pain, so I was not sure the day would be easy. The braces were even cooler in person, and Mason said “why would I wear boring braces like these (his blue compression braces) when I could wear the coolest braces like these?!” We got the braces on, realized his new shoes would not fit his AFO’s. The orthotist put on the shoes he brought, Mason was immediately disappointed because these shoes just were not as cool as his other ones.

His first day in braces, was to put it lightly, horrible. He hated them, he was so disappointed by his shoes, and the fact that the braces were not comfortable, and he had to eventually wear them all day. His feet were hot, he has to wear shoes all day with the braces. They were hard to walk in, and he just felt so defeated that day.

Day two, we came up with a reward system for easing him into them. We also, with the help of a few awesome friends, got him two pairs of new shoes that are pretty cool! (new balance extra wide in red, and we are waiting on the other pair, hopefully they fit!) We also found some socks for under AFO’s. (smartknitKids seamless sensitivity socks, they were a lightening deal on Amazon, so they were about $16 for a pack of 3! They are very soft, and moisture wicking!) He was way more positive about wearing the braces. By day 3, he was able to wear them all day, no complaints. He was walking better, obviously moving with more ease and more control of his body, not to mention, his knee was looking so much better!

Today, we are on day 5. He wears them all day. We have some struggles. Sensory wise, when they come off, he is sensory seeking non stop. Its like he can all of a sudden move again, and he can not stop moving for over an hour. We have noticed an increase in his back pain, but I think that it may just be because his body is in a better alignment, and he needs to adjust. Fingers crossed to it being that simple at least.

Hoping as the next few weeks go on, the braces continue to offer support, and helps avoid flare ups for awhile. He starts aquatic therapy next week, and between the two, I’m hoping he has some relief.

Thanks for following along on our journey with us,

until next time,

Tiffany.

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

Mom guilt..

Ok, it’s not just moms that feel guilt, maybe a better way to put it would be just ‘parent guilt’. Every single parent, whether they have special needs kids or typical kids have felt this. If you’re anything like me, you feel it daily. I read a quote once that said “the very fact that you worry about being a good mom, means you are one”. I hope its true, because I worry everyday.

Parenting is so hard. Some days it drains every ounce of you, and you think you can’t possibly get up and do it again the next day. Thankfully, we are resilient like that, because we do. When we are tired, we are sad, worried, stressed, and pulled in every direction, we still manage to get up and do the things we need to do. I can tell you, some days I don’t want to get out of bed. Some days I just want to lay there, and have a pity party. Cry because I feel alone in this village. I have amazing friends, and family. Our family lives far away, but FaceTimes with us daily, and the family that is close helps when they can, of course. It still gets lonely. The fact that even though you have read every possible thing you can, it doesn’t answer your questions. The sinking feeling of not knowing what the next year brings for Mason, some days washes over me, and I cant function.

I know what it feels like to lay in bed at night, and go over all of the things you said, did, or didn’t do that day, and it eats you up. You promise you will wake in the morning and make different choices, be a more gentle parent, be more present, play more.. whatever it is you feel like you didn’t do.

I try so hard to make all of my kids feel loved, appreciated, and respected always. Some days though, when Mason is having a hard day, I gravitate towards giving him the majority of my attention. I get quick to anger with my other two. While truly they aren’t doing anything wrong, they just are capable of doing more for themselves at that moment. I cater to Mason on his bad days, because I carry him a lot, or I help him walk, and make sure he is comfortable, and has water, and all of the things.

Not giving Sydney and Maddox the same kind of attention on Masons’ hard days, doesn’t make me a bad a mom. It makes me a tired, and worried mom. Don’t get me wrong, every night when I lay my head down, I think about all the ways I could’ve done better, all the things I should’ve said ‘yes’ to. It consumes me sometimes. No one tells you, or warns you how much you will overwhelmingly, heart bursting, aching kind of love, love these little humans, while you simultaneously need a break from them. While you worry about how your bad parenting days are affecting them.

Can we all just agree that parenting guilt is real? That we hype up other parents, and let them know how amazing they’re doing? Be the person who brings that bit of reassurance to their day. It takes a village right? We may not all have a village in person, but we can be a village online.

Moms Dads, you are doing great. Its OK to worry day after day about children, especially when they have special needs. It’s ok to beat yourself up a little. Just remember, it’s not just you. Reach out to someone, you may be able to change the direction of someone else’s day.

You are not a bad parent, you are having a bad day. Its ok to feel it, validate it, and give yourself some grace. Bad days pass.

With so much love until tomorrow,

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.

A little about us..

I’m Tiffany, a mom of three. Mason is 8, Sydney is 5, and Maddox is 2! My husband is Bryan.

About 3 years ago, after my oldest son had an incredibly hard recovery from a Tibial Torsion Surgery, we knew something else was going on. We went to countless appointments, and had specialists evaluate him. After extensive genetic testing, he was finally given a diagnosis of Ehlers Danlos Syndrome, classical type 1 with hypermobility, and two genetic microduplications. One that can contribute to Spectrum type disorders and another to aneurysms. He was diagnosed with Sensory Processing Disorder, and every 3 years he needs an echocardiogram.

Ehlers Danlos Syndrome is a defect in the connective tissues. It can be characterized by, joint hypermobility, dislocations, subluxations, pain in joints. Also, skin hyperextensibility, and slow wound healing. Mason will get an injury, and it can take a normal scratch months to heal, and then he has either very thin scars, or very thick ones. His skin is very soft, and very fragile. His hands and feet sometimes will turn purple or a very intense red color. He can and does often dislocate his shoulders. This started last summer after he tried to scratch his back, and his shoulder came out of socket. Since that time, all he has to do his raise him up and slightly back, and he can dislocate his shoulders. A few weeks ago we had our first knee cap dislocation.

At 5 years old, we had no way of knowing what Ehlers Danlos Sydnrome would look like for Mason. Even now at 8, its hard to imagine what it will look like years from now. The hardest part of EDS for my husband and I, is just simply not knowing. Not knowing if we are making the right choices to protect his body. Not knowing if he will be able to grow up and move out, and live successfully on his own. As he gets bigger will his pain get greater, and harder to manage? No one can answer these questions truly. We can guess, and we can hope, but for now, we manage what we can, protect his joints as best as we can, and move forward.

We take each day as it comes. Some days, you could never tell that Mason has pain. Other days, he cant walk, or stand without feeling like he will fall over. His legs will hurt so much his feet turn purple, and he needs to carried. His knee has started to bow out, a condition called ‘genu varum’ or ‘varus of the knee’. This isnt as common in Ehlers Danlos Syndrome, but can be a variation of normal. He was just fitted for a full leg brace, and an AFO on the other leg. Hopefully, we can get his leg straight again, before he grows again. The older Mason gets, means he gets bigger. Which in turn means that his joints have more weight to support, his body has to work harder to keep things in the correct places. Growth spurts are exceptionally difficult for him to manage.

Being a parent of a child with an invisible illness is a whole new world, i didn’t realize had to exist. The constant need to explain yourself, explain your child, and the decisions you make each day. The doubt that people have, because on the days that people see him, hes doing great. We choose activities carefully, and plan ahead for pain.

Id like to use my voice, and my platform to talk about Ehlers Danlos, and the weight on a parent with a child with an invisible, or visible disease. I know that I could use the support, a place to put my words, pour out my heavy heart, and to give a hug with my words to another parent who feels this same weight.

-With Love, Tiffany