A year we try to forget..

**Trigger warning for this post, there is talk of miscarriage.

In June 2016 Sydney was not quite two years old yet, and Mason had just turned 4. Sydney had chronic ear infections, and she would not sleep. She had night terrors, and she would be awake all night long. It was brutal. She finally had tubes put in her ears, and things calmed down. Shortly thereafter, Mason started limping.

Now he had done this many times and it always went away. He would limp for a few hours, say his foot would hurt a little, or his hip would hurt. We discussed it with his doctors, but they said he was just always spraining his ankles, or twisting his hips funny. Mason’s feet turned very far in, and so we always took what they said, and believed it. We did question it, but we were not the doctors. Then, the limping didn’t go away, and one morning he wouldn’t even get out of his bed. We finally decided to go have x-rays done. That’s when we ended up at Akron Childrens orthopedics. He was casted because they thought he possibly fractured his growth plate.

By July, One week into this new cast, and I called and requested it come off. He looked as if he was going to break his leg above the cast because his legs were so weak, and his joints so flexible. They had us come in and evaluated him. They decided to take off the cast, and put him in a walking boot. Also having us schedule him with Dr. Kerwyn Jones. He would help us figure out what was going on. His feet turning in was a big concern for them. The day came with Dr. Jones, and I had myself hyped up that he would say there was no need for concern, because there just couldn’t be anything going on. He was perfectly fine.

He watched Mason walk up and down the halls, checked his feet, his knees and every other major joint. He asked a bunch of questions, double checked Mason did not have any type of muscular dystrophy. I knew at this point, it wasn’t nothing. Then he said, he truly felt that Mason needed surgery. We could go the route of 6 weeks of physical therapy, but while he felt therapy was a wonderful tool to use, that it wasn’t going to change Masons feet enough. He explained that the surgery would be on both feet, and they would go in at his ankles, cut his bones, and turn his feet. Then they would use plates and screws to hold them all together. He would need to be in the hospital overnight at least 1-2 nights. No walking for four weeks, and then walking boots for 4.

He gave us time to go home and discuss what we wanted to do. We talked and cried and debated whether or not we thought he could handle it. We didn’t know what to expect, but we knew that this was the right choice. We knew he needed this. We planned, got as many things as we could to occupy him while he was bed, couch and wheelchair bound for four weeks. Lots of ipad time, legos, coloring and paw patrol toys. Then surgery day came in August. It was a long couple hours, the longest of our lives. He came out of it great, he was smiling, and happy to see us. He had a nerve block, and quite a bit of pain medicine. The first night in the hospital was ok, he did good. He watched a lot of movies, played a lot of Ipad games, and didn’t sleep. Then he started screaming, his feet hurt, they were swelling up in his casts, and they had to come and cut the sides of them more, to relieve the swelling. It was horrific. We knew it needed done, but we all cried, even his nurse. After that, he slept, for a while, and he had the shakes, and he couldn’t stop twitching. Watching your tiny little four year old like this is just heart wrenching.

After three days, we were able to go home. He was thrilled to get to go, but being at home, was way more challenging than we had anticipated. Figuring out how to get him to the bathroom, or teaching him to go in a portable urinal, all things that were difficult to say the least. We also had our two year old Sydney, who wanted to play with Mason, and would forget that she had to be careful. Mason was on pain medicine, he was in pain and so tired. Therefore he was incredibly cranky haha. He did really enjoy all the extra screen time he got though, and the gifts people dropped off!

We were able to get Mason into his preschool in September, and they were amazing. They helped with his wheelchair, they helped him be able to go to school and have fun. I’m truly thankful his preschool helped us so much.

Shortly after we got home from the hospital, I found out I was pregnant. Major surprise. Then we found out we were having twins.. and we were shocked, but it didn’t appear that the babies were growing like they should. We knew that a miscarriage was probably going to happen. We waited, I was 10 weeks along, and it happened in the middle of the night in october. We were obviously devastated. I struggled with what was happening in our lives. Between Mason, and the loss.. I wasn’t sure I could handle much more.

Two days later, Mason had a school field trip, and thankfully Bryan was going to take him. I had a lot of pains that morning, and I wasn’t sure what was happening. I assured him I was ok, and to leave Sydney with me. Take Mason and focus on helping him have fun and the wheelchair! About 45 minutes after he left, I knew I needed to go to the hospital. I had a friend come pick Sydney and I up, drop me at the door of the hospital, and take Sydney. I assured Bryan I was ok, focus on the field trip, Mason did not need any worries. I ended up needing a procedure to clear out the rest of the miscarriage, because not everything passed. Bryan met me up there when he was done, and we cried more. I got to go home, and rest. A few days later, I needed another procedure because I had precancerous cells on my cervix that needed removed. I felt like my body, and my heart had been through hell.

During all of this, Mason had appointments for follow ups from surgery, he still didn’t want to walk, couldn’t walk, or struggled a lot to walk. He would have days he was in so much pain, he would cry, and have a low grade fever. He had physical and occupational therapy two times a week, where they were helping him learn to walk again. How to better manage his hyermobility. His doctors, and therapists all knew something else was going on. No one knew what it was though. It wasn’t clear cut, nothing stood out as to what could be causing what was going on.

During this time also, Sydney needed her tonsils and adenoids out. She was just barely two and at this point we knew we had no choice. Her tonsils were covering her throat. The night we came home from her surgery, Mason had a high fever, with redness and swelling in his legs where his incisions were. I packed up and had to take him right back to where we just left with Sydney. He was admitted and they did lots of tests. He had an infection, thankfully not in his bones. High doses of antibiotics, and then we got to go home the next day. Sydney handled her surgery like the strong willed little girl that she is. She is spirited, and she would only eat popsicles! lol

At this point it’s now november, we felt like we had been through so much, our heads were spinning and we couldn’t make sense of any of it. We got into genetics at this point. Mason had testing done, we also had to have the testing done. It was going to be a long process. We had the testing done, and we waited. Mason was starting to walk better, and was playing more, and doing more things that he had done prior to surgery. We were hopeful, genetics would come back and it would be nothing. It was just that surgery took a lot out of him.

By december, we had not heard much from genetics. Sydney was struggling to gain back weight, she woke up one morning, and couldn’t stay awake. She would cry her stomach hurt. After half of the day being this way, I took her to the ER. They admitted her. No real answers came from that, other than she had some damage from being on so many antibiotics for so long. Even her teeth were showing signs of decay. After 24 hours of being observed, Sydney felt better. We got home just in time to settle in because it was almost Christmas.

We felt like we had no idea how we made it through those six months still partially sane. We enjoyed Christmas with our families, and hoped 2017 was better!

I found out right before valentines day I was pregnant with Maddox, and we were so thrilled, but so scared. Then shortly into March, we found out Mason had Ehlers Danlos Syndrome. We had no idea what that was, nor did we know how to say it! We dove in headfirst into anything we could find about EDS. It made us more scared. There is no real literature that says what to expect, it says what CAN happen, what MAY happen, but not what WILL happen. So we waited, unsure of what would be next for him.

Now, its 2020, and We still don’t know what to expect. We are ready, and we are better prepared for what may happen. We have an amazing doctor for him, and his team at school is better than we could have ever imagined.

We have held onto what this year was for us, and we don’t talk about it much, not even between the two of us. We try to forget how rough, and devastating that whole 6 months was. Maybe that is why I wrote about it today. We have opened up, and shared with so many people, and answered a lot of questions about how we found out. This time has been so far into the front of my mind, that I needed to get it out. Document it, something.

As always, until next time

Tiffany.

Go to the ends of the earth for you..

When Mason was a baby I used to sing him a song, and the lyrics had “Oh theres nothing that I wouldn’t do, go to the ends of the earth for you to make you feel my love..”

I just never knew how true those lyrics would be for us. Getting Mason a diagnosis, researching everything we possibly could. Calling our Doctors nurse line so I could ask more questions, make sure we were doing everything! Therapy appointments, school meetings. Emails to teachers, IEP meetings, school therapists, you name it, I’m on top of it. Getting my son the help he needs has never been hard. We are so thankful that we haven’t had to fight for a diagnosis, for a doctor to listen to us, and for a school to advocate and help him. Standing up to people who don’t see his illness, because it’s mostly invisible. Making sure we spoke up if people didn’t understand.

Getting Mason a service dog however, it’s hard. Financially and emotionally. You always want to do whatever you have to do to help your child. Admitting that your son needs more help than he is getting. Admitting that you need more help than you have. I’m not superwoman. I try to be, but I get tired and run down. Emotionally, mentally, physically. Coming to the conclusion that Mason was going to need more than I could continue to give, was hard. Finding out how much a service dog could bring to Mason’s life was mind blowing.

Also, asking people, strangers especially, for help, is so far out of my comfort zone. I’m a people pleaser to my core. I don’t like to ask for help. Opening up our lives, calling businesses, AND asking for money. All things way out of our comfort zone. We don’t even like to order pizza via telephone. I will go out of my way to order it online ha.

As a parent however, which I’m sure you understand, you will do anything, regardless of your comfort zones if it means it can help your child. Being able to see Mason grow, and become more independent, to be able to do the small tasks that take so much of his energy. Is worth every awkward phone call I have made to a business, explaining that I have no idea what I am doing, but I needed their help! Sharing over and over again on social media platforms, worried that I am getting annoying. I know my son NEEDS this, and I am willing to do all of those things.

We are just getting started on this journey, and I know this next year waiting for (hopefully ADA) his dog will be long. We are so thankful for everyones love and support.

If you want to donate to Mason gets a service dog, our go fund me is https://www.gofundme.com/f/mason-gets-a-service-dog?sharetype=teams&member=5138842&utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=f497521b62704852b0c25308e7e2362d&fbclid=IwAR1BSxDxbvMUAp9iB1IR2VVgeORVJBH5tAOVZXTuYOYJLFlmLR-orVHkud8

Venmo- masonsSD-1

Paypal- bshriver1910@gmail.com

I will post updates on fundraisers, and Tshirt sales over the next week!

as always, until next time,

Tiffany

Mason gets a service dog…

We have debated back and forth for what seems like months now on the possibility of getting Mason a service dog. The financial aspect of it was what really made it seem like it was totally impossible to do this for our son. We knew we needed to help him somehow, but what we were doing wasn’t working.

Mason is nervous to go outside, nervous to do a lot of physical activity because it causes him pain. A few months ago he went on a slip and slide, and didn’t walk after for about 6 days. Ever since then, he doesn’t want much to do with physical activity. Heat makes fatigue worse, fatigue causes more weakness, weakness causes even more pain than his normal baseline of pain.

For us, a wheelchair was not something we wanted to do. There were some days when we thought we wouldn’t have a choice. I was physically carrying my very tall and very heavy kid all over the house, while simultaneously caring for our 5 and 2 year old. It was hard some days, physically and mentally. However putting Mason in a wheelchair could very well mean he would slowly start to rely on it more, until he doesn’t get back out of it. At eight years old that was not something any of us were ready for.

Now we know a service dog can’t carry Mason around. We do know that a service dog can help him with the smaller tasks that he needs to do daily, and it will take away some of that fatigue. Fatigue that sets him up for very bad pain days. A service dog can help him when he is walking, help him in so many small ways that we would never think of, or be able to do for Mason all day long. I want him to learn to be independent, and with that comes him learning to manage the pain and the fatigue and be able to still accomplish the “musts” of a day. In the chronic pain community this is called the spoon theory. People with chronic pain conditions have only a few amount of spoons a day, and each tasks you do in a day uses spoons. Tasks like brushing your teeth even uses a spoon. Once those spoons are gone, you are done. You need to replenish your spoons, and sometimes it can take days to get them back. A service dog can step in and help assist Mason so hes not using as many spoons per task.

A few days ago we opened up to our community that we needed to raise the funds to help get our son a service dog. You guys, the amount of people who have donated, shared and just helped us is astonishing. We have multiple fundraisers in the works, Tshirt sales, and cookie sales. I won’t give away too many details yet, because we don’t have them all in place. In the coming days though we will be posting about each one of them and how you can be apart of them.

While nothing is finalized, we have found the dog for Mason. Her name is Ada. She is a one year old bernedoodle, and she is exactly what Mason needs. She is currently getting training and It will take about a year for Ada to be able to come home to Mason. She still needs a lot of training specifically for him. As we know more about her, and things are more final, we will share more.

We don’t have enough words to say how truly thankful we are for the amazing community we live in that has rallied around us. You are truly helping to change Masons life, and the ours too.

From the bottom of our hearts, thank you for continuing to read, and for sharing Mason’s story.

Until next time,

Tiffany

here is the link to our Go Fund Me- https://www.gofundme.com/f/mason-gets-a-service-dog?utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=e93391a962fa4f3d9c07f41b34717fab&fbclid=IwAR0mcAhIA6FOE7Nkm5ho9J9s1W8-G3HrQDtlb-NOxDNNt9YLpxeItaFSvi4

We also set up a venmo account for #masongetsaservicedog, we know some people prefer not to use the go fund me. masonsSD-1

A little help..

If a year ago you would have told us we would be where we are right now, I wouldn’t have believed you. Even six months ago, I would’ve questioned it. Six months ago, Mason woke up everyday able to get around. He had pain, and some days where you could tell he hurt a lot. He still was able to walk, and get around.

In april, Mason started complaining about intense pain in his legs and sometimes, (most of the time now) his back. He won’t walk, or get up. We help him do everything he needs to do. Now don’t get me wrong, some days, you could look at him and not have a clue that he couldn’t walk a day ago.

We have been to countless doctors appointments to try and understand how or why he declined so suddenly. We have gotten AFO braces, but they seem to make his back worse. We have done physical therapy, and we started aquatic therapy. We have been to his chiropractor, to neurology, rheumatology, genetics and of course our beloved orthopedic doctor, Dr. Kerwyn Jones. He has been a major part of Masons journey, and we are super thankful for him. Our next step is to head to a physiatrist. Which I had never heard of, and was sure Dr. Jones at first was crazy sending us to a podiatrist. ha. This new doctor, is similar to an orthopedic doctor, but focuses more of management as opposed to surgical.

Genetics wants us to do an extensive amount of genetic testing, to make sure we aren’t missing anything. Either something secondary to EDS, or EDS being secondary to something else. However it’s very unknown obviously if there is anything else. Genetic testing unfortunately is not covered by most insurances. Sadly, healthcare in the US makes it so you have to choose between substantial medical debt, or tests and treatments etc. It’s sad. We haven’t decided yet on what we will do, but we have want to meet with this new doctor before we decide. Having Dr.Jones to help us problem solve and prioritize helps.

In our attempt to find a way to help Mason get around the house. To find the desire to go outside and exert himself some, or to get through a school day and school week. We found out about how helpful a service dog can be. They train these amazing animals to be able to help him walk, by giving him support. Turn on lights for him, get snacks when he can’t get up. To alert us when he wakes up in the night and he can’t walk and needs to get to the bathroom. At this point, we use a baby monitor and he texts us from his iPod. Which it’s not a foolproof plan. Don’t misunderstand, this isn’t every night. This only happens on the bad days, the days where he’s not moved much. There are some nights though, that he goes to bed just fine, and wakes up and can’t get up. Having the security of his dog would change his life. Give him to need to go outside, give him the courage to do more without fear that he will struggle. Help him view it as fun, and not potentially putting him in a flare up.

It’s easy to think that we should just get a wheelchair, and help him like that. However, the more he is in the wheelchair, the less physical activity he gets. The more bad days he has, the more he uses it. Then eventually it may be easier all together to stay in it. Now we know this may be a future possibility for him, but at only 8, we are not prepared to head down that path. We are doing everything we can to avoid that.

He struggles now to get outside, some of it I know is anxiety. Typically he will get outside and it won’t be long until he’s pale, and in pain. In his mind, outside, and physical activity puts him in so much pain. I’m sure he thinks ‘why do it if it just means I’m going to be miserable?” We can push him to get out, but anyone who has children knows that isn’t always easy. Also, I don’t blame him. If I knew getting outside, or going to the park, or doing things like that, would make me feel the way he does, I wouldn’t do it either.

This is where we think a service dog would help, ease some of those worries. Along with helping him physically stand up, move around, and comfort him.

We have started the process of fundraising, and applications for a service dog. We have one prospect, a dog named Ada. She’s in need of a new handler, and she’s already partially trained to Masons needs. She is also the type of dog Mason will need. Due to his allergies, and his physical needs from the dog, he needs a very large dog. A bernedoodle, is ideal. It just so happens that Ada is a bernedoodle.

This is where we are reaching out and asking for help from our friends and family. We have set up a GoFundMe, and looking into all of our options for fundraising locally to help raise the money. I’m going to share our GoFundMe here.

https://www.gofundme.com/f/mason-gets-a-service-dog?sharetype=teams&member=5138842&utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=0b2b0156bee04df2bab425fa47d1d848

Mason drew this picture of himself and his service dog, even included his dogs vest. I love this picture, because look at that smile on his face of his version of himself.

If you’re not able to help by donating, that’s ok. If you wouldn’t mind sharing his story, and helping us spread the word of what we need, we would be so grateful.

Thank you for everything, and as always,

until next time,

Tiffany

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

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

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.