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