We have news!

One month ago after we had done a lot of research on a service dog for Mason, and what that could look like for him, checked into all different types of services, companies and non profits. Talked about if we could ever afford to do this for our son and how we could. We were skeptical, and hopeful. After feeling like every route I went to, wasn’t the right fit, and I couldn’t figure out why. Nerves, money, etc.. I wasn’t sure we would be able to make this a reality for him. It seemed like it was too far out of reach.

I was spending another evening searching for companies, ways to fundraise and how to get a mobility service dog. I stumbled upon Providing Pawsable. I saw she was active on her Instagram, I decided to message her. I sent her a long message explaining what Mason’s condition was, what we knew he needed, what type of dog he would need, and wanted to know if she could help. She responded saying, she not only could help, but she also has the same condition as Mason. She also said she had JUST talked to a lady who was looking to rehome her one year old bernedoodle service dog. We knew we had been drawn to contact providing pawsable, so that ADA could be Masons dog.

Nothing was for sure, because we weren’t sure how we would even come close to being able to pay for ADA. We decided to jump head first into the whole thing. Fundraising, learning everything we could about service dogs, how we could incorporate ADA into Masons life, wellbeing, school, everything. We set up the Go fund me with extremely low expectations. Within one week we have 3 fundraisers set up, and had already hit our halfway point to our goal. We exceeded our goal, and can pay for ADA and the travel costs to bringing her here, the gear she needs, the food, grooming everything. This community has surpassed every expectation we had. We can’t believe that in 2 weeks Mason gets to meet ADA. They will start training together, and learning each others needs, and personalities. By school next year, ADA should be with Mason full time, everywhere he goes, even to school.

I reached out to Deb, ADAs current handler, because I wanted in her words, why she was rehoming ADA. I want to be sensitive to her feelings through all of this, and I knew Deb would do an amazing job at explaining! This is what she said :

“A bajillion years ago, when dinosaurs roamed and I was working on my thesis, I learned the efficacy of service dogs for invisible disabilities. I learned the value of allowing task trained help to do what you can not do, or maybe forget to do, for yourself.  I learned that disabled is mislabeled and teams are always stronger.

Roughly 15 years later, I started down the path of getting the help I need. Again. It took me about 2 years to assess my needs and look for my own service dog. With a possible task list of over fifty ways I could be helped on the daily, I choose a Bernedoodle based on general breed characteristics. When ADA was born on the 29th anniversary of the American Disabilities Act being signed into law, I knew my pup was born.

I choose carefully and with guidance. I left her in puppy school. I brought her home and bonded and send her off to boarding school. We moved and Corona happened.

No outings and no more in person training. I felt isolated and overwhelmed by my inability to effectively train, to speak canine. My last service dog, over ten years ago, came with 18months of training. This was different . I found help through Providing Pawsable.

And, peace. I could talk to Rebekah about my grief that we weren’t a “fit”, this nebulous thing I couldn’t quite pinpoint.

One day I said, “I feel like I’m married to my gay best friend. I mean, we love each other. We help each other. We are good with each other and we still are not a match. What am I doing wrong?”

Rebekah helped me see I was doing NOTHING wrong. ADA was also not wrong. And sometimes it was just that way.

Everything I learned helped me to understand the tasks that would help me most. So Rebekah helped me start planning for my next service dog, given the life I actually live, not the lifestyle I want to live.  We started planning so I could transition both ADA and me, when we found our true partners, preferably about the same time.  🙂

Then Mason. And all my plans to keep ADA for me until my new companion was ready? They went out the window.

The time is fast approaching for me to bring her to boarding school so she can be his. I am thrilled for them both. It’s an honor and privilege to be a part of this beautiful match. Am I sad for me? Yes. A lot. Often. And also peaceful and hopeful. I’m dancing with it all. And I feel strongly that doing what is best for the greater good makes my life better too, even while I grieve.

Thank you for asking. Thank you for letting me share. Thank you for fighting for your Boyo and for finding us.”

I can’t say enough about the level of gratitude we have in our hearts. How blown away we are by our amazing community, and how thankful we are for Providing Pawsable, and ADA’s handler Deb. What Deb is doing for our family is something I have no words to truly put it perfectly, but that will forever change the course of Mason’s life. The acts of kindness, and the amount of love and support we have all received will forever be something that will have a major impact on our lives, on our kids lives, and the way we raise them. Kindness, love and generosity is always the path that we want to be on.

ADA is named after the American Disabilities Act. Her birthday is on the day that Service dogs were signed into the ADA. So her name is in all capitals, and will stay that way. We love it, and its an amazing way to educate people on the history.

Thanks for being on this journey with us,

until next time..

Tiffany

ADA

Being the people deserving of these gifts..

Its early in the morning, I’m sitting and enjoying my coffee in a very quiet house while everyone is still asleep. It’s given me time to really reflect on the last few weeks. I’m crying tears of pure joy. It could be the fact that I have actual quiet time, with hot coffee that has intensified my grateful heart this morning. Let’s be real, quiet time in the house is extremely rare!

We reached out and asked our community, and complete strangers to help us. Help our son, and our family. Getting Mason a service dog was something we thought was going to be out of our reach. We were coming up with ways we could figure out how to pay for his dog, on top of medical bills and our daily bills. It didn’t seem realistic. We thought it would be long shot, to even come close to making the money on a Go Fund Me. We set our goal low, and our expectations even lower. We by far underestimated the community we live in. We considered cancelling our fundraisers because we hit our Go fund me goal. We talked to family and friends, and the businesses hosting, and they all assured us that we shouldn’t. That the first initial cost of the dog, would not be enough. If we are able to raise the funds to continue to help make sure we have all of the things they would need would help us tremendously. We have worried, and lost sleep over what to do. We were so afraid to come across as greedy, or not thankful for what we have already received. Not only have we met our minimum goal, but we have businesses that are still rallying around us to make sure we have exceeded our goal, to help pay for the cost of owning a service dog. I talked to the owner of a business yesterday that is doing a fundraiser for us, and they just blew me away. They didn’t want to stop just because our first goal was met, they wanted to make sure we were set for future needs of Mason and his dog. I cried, and thanked them.

During all of this, we also months ago won a room makeover. She’s local, and runs an amazing blog, and we were nominated by a few people to receive a room makeover. Her and some other local moms came yesterday to not only makeover our bedroom, but our two older kids room also. She is almost all finished in our room, and it is beautiful. Bryan and I have never purchased things to have a nice master bedroom. Our money always went to other things, bills, kids etc. Now walking into our room, it feels like an oasis. An escape from the sometimes so overwhelming days that we have. I can not wait to see how amazing our kids room turns out.

Sitting here yesterday while these women came in and gave our room a major facelift, I felt so consumed with gratitude. The last two weeks we have been given so much, and told so many times that we are deserving people of these blessings. It’s hard to accept that, what makes us deserving? Are we actually deserving of this? Have we done enough good to be on the receiving end of these amazing gifts? I don’t know, I hope. I hope we can re pay this feeling of intense feeling of gratitude to another family. Can we make sure that this not only changes our lives, but our kids lives as well? This happening to our family, while my kids are young, but old enough to try and understand that there are so many good people in this world. When the majority of what you see is bad, scary, hateful. Then this happens, and comes at a time when you so desperately needed to see and be reminded of the amazing things that can happen.

The Giving Tree..

Tonight my youngest came running to my husband Bryan to read him the “book that has daddy on the back of it”! Shel Silverstein with his bald head and beard on the back of the book resembles my husband. He also has a bald head and beard lol. As long as I can remember ” The Giving Tree” has always been one of my all time favorites.

I have loved reading it to my kids, and sometimes crying. The days where I felt like I had given all I had, then I would read this book, and it put it so perfectly. They have never really asked any questions about the book before, tonight though I listened in while my husband read to them.

“Daddy why does the tree keep saying shes happy when shes giving away everything she has?” Bryan said, It’s kind of like how Mommy and Daddy would give up anything and everything if it meant you would be happy and safe. We would do anything to make sure you have everything you need in life. This answer satisfied the kids, and they happily listened to the rest of the book.

It got me thinking though, as parents we really do give it all. We would give everything for our kids, for their happiness, their well being, truly anything. One day you’re young and care free, never could imagine there would be a day when you would be willing to give up your life for another human being. Be willing to sacrifice everything for them. Then you bring this beautiful person in the world, and suddenly you know you would give up your entire life, if it meant it would save them on single day of heartache.

When they’re small, you can hold them and rock them, and tell them over and over again how deep your love is. You don’t truly know who they are going to be yet in their life, but while they are a total stranger, you also know and love every single thing about them. It’s such a strange emotion. As they grow up and you watch them change into these little people, they have their own thoughts, and feelings. You realize how truly amazing their little minds and souls are.

How lucky are we to a part of shaping these little people into big people, who grow up and have so many things to contribute to our world. The things you have instilled in them, the way you have set the examples, and taught them along the way. What a privilege it is to be able to love as deeply and whole heartedly as we do for our children.

I never want to forget how lucky I am, how privileged I am to be raising three amazing humans. The endless amounts of forgiveness for when I mess up. I mean kids are the most forgiving people, I am so thankful they give me so much grace, because I mess up everyday. I apologize frequently, because I get angry and overwhelmed. I yell, I overreact, and sometimes I don’t stop and listen to the little things. I don’t want to watch them grow up and move away, and forget all the small and big joys they bring to me daily.

These days seem so endless when they’re young, but they aren’t endless. The days where they are home, and needing you for so many things, and wanting an extra snuggle, wanting to tell you every little thing they are doing. Yelling from the bathroom that they need help, when they want their 100th snack of the morning. They are slowly coming to an end. One day, they won’t ask to be held any more, you won’t notice it at first. Then one day, you remember when it’s all they asked for.

“The days are long but the years are short..”

“and the tree was happy..”

Tiffany

Information on how to help..

If you want to find a quick reference for all the ways we have set up that you can help Mason get his service dog, I’m going to list them all here. Feel free to share this post directly. We will be updating this page frequently as more information comes to us!

All of the donations made by all of you amazing people, and Vans Tires helped us reach our first Go Fund Me goal. We made our goal as low as possible because we never imagined it would ever be met! We are so thankful, and want to assure you that anything made beyond our $12,000 goal goes straight towards anything Mason and his Dog will need. Extra needed training, grooming, veterinary care, food, equipment, treats etc. Which can be so costly, so any help towards that will make a huge impact for us! This is our link

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

Tshirt sales from A-1 sports that will be open until August 16 – https://masongetsadog.itemorder.com/sale?fbclid=IwAR1qg4SSYkKfTKaWMF3SPgPDrefmFuc6TGOYQ3B4ulXu-u1QOe5X964iJMY

Advanced Performance crossfit will be hosting a fundraiser on August 8. This is private members only event. Tshirt sales are closed to the public as of july 31.

Water Main grille is hosting a fundraiser that has been sponsored by Kimmel heating and cooling, and Vans tires. August 9 from 4-8 pm will be carry out dinner. You can start your orders by 2pm that day to avoid missing out! 110% of the proceeds go to Mason getting his service dog! Come get an amazing meal! My husband and I will be there taking orders and bringing it out to cars! We can’t wait to thank each of you in person!

Valley Cafe and Dolce will be selling dog biscuits! proceeds will go to Mason getting his service dog! A donation of $5

August 23 Sub Station will be hosting a fundraiser from 3-6 pm. There will be more details on this night to come! There will be a raffle and some great prizes, and live music from a wonderful local musician!

We are incredibly thankful for everyone who has helped and donated. We are blown away by the kindness of everyone. You are truly helping to change Masons life. Thank you for not only helping Mason get his service dog, but to help us go into the responsibility of owning a service dog more prepared, financially! We never imagined we would have so many amazing people stepping up to help our family!

Tiffany

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

Forgettable..

This post is different today. It’s not about EDS. It’s deep in my feelings, ones that people don’t talk about often.

Do you ever feel forgettable? You’re a great person, accepting, loving, a decent friend. However, you aren’t quite enough for people to remember you. You watch all the friends you thought you have, get together with all of their other friends. Plan weekends together, vacations etc. While you were never invited. At some point or another I have made what I thought many friends. This couple would be the one, finally! Then you’re never invited again, you try to invite them..but they always say “oh let us look at the schedule..” then never get back to you. This is an endless attempt, until you get the hint.

Listen I KNOW life is busy, and friendships are harder when your’re older. Social Media can really mess with you. You see all of these people going out, having friends over. You just never quite make the cut to be in “the group”. My husband and I have so many “groups” of friends over the years, but we are always the “forgotten ones” we stop getting invited to the game nights, the dinner parties, the play dates, the birthday parties.

To be honest, it’s exhausting. I’m thankful everyday my husband is my best friend, but sometimes, it would be so amazing to be able to get together and have another couple in our lives.

For example, my husband, is incredible. He works so hard at everything he does, he would help anyone. Be there to help them move, to help them do a project at their house, anything. Yet, there isn’t people that would do the same for him. He is the most loyal, thoughtful, hardest working man at everything he does. His job, his family, crossfit everything. Yet, he doesn’t get recognized for any of it, except from me. Which he says is enough. He’s amazing like that though.

Our life is hard. We have so much happening all the time, and maybe that’s why. But, to be buried in worry for your son, doctors and therapy appointments for him often, and two other amazing kids to love on too. However to add loneliness and no help, some times it hurts to breath when you feel like your drowning in life and loneliness.

You read the posts about finding your village, having family or friends that come over and help, bring your head above water.. and you wonder what that would be like. How different our life would be, if we had that. If it would be easier to get through your week of endless doctors appointments, because you had this “village”.

Is the grass really greener on the other side..?

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