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

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

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