JB's Keys to DMD
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thoughts from a mom

speech from tackling duchenne 2022

4/13/2022

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Thank you to all of sponsors, donors, & volunteers. Please look in our program to see them all highlighted. I hope they realize what a profound impact they have on so many in the Duchenne community. 

JB’s Keys to DMD was founded in the fall of 2009. JB had just turned two years old and had been diagnosed with Duchenne for less than a year. It was the spring of 2010 that we hosted our first large event. There were many, including me at times, that were unsure about how successful that first event would be. There were definitely some skeptical moments sitting around the Stevenson’s dining room table on Muskett Lane. But, we gathered at the Boston Harbor Hotel and anyone who may have been questioning the success of the event, or the future of JB’s Keys, no longer had questions. Thanks to supporters like you we have been able to make a real impact since that time. We have raised close to 3.5 million dollars that has truly changed the lives of so many young men living with Duchenne and their families.

​You can hear from them in the wonderful video that Teeson Reps and Tim Llewellyn put together. Thank you to them, and to the families who were willing to be interviewed. It was a very long day last Saturday but it was, as always, an interesting time with the DMD crowd. Poor Tim and Jenna had to keep telling us to keep it down!  I could have never imagined over a decade ago, this group of support that is around us. It seems cliche but it is like a family. A family with a wide range of personalities, who find humor in the unlikely life of Duchenne. It is a family you do not want to be a part of, but you are very thankful that you have them! 

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Aside from the change of not knowing what this organization would do, there have been so many other changes. This little boy is now 14 and has been through a whole lot. Things that you can not really fathom when Duchenne is merely a diagnosis on a tow haired toddler. He made many strides after his diagnosis. He learned how to walk, he even ran for a while. He played little league with his typical peers, he played golf he practiced running touchdowns at alumni stadium, spiking the ball and doing touchdown dances, he hiked to the top of Noanet peak, he swam out to the raft at the CBA, he learned to read.

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Almost all that he has gained after his diagnosis is now gone, aside from the reading that is. I would love to say now that you can not keep a book out of his hands. But, as a couple of his teachers know, that would just be a lie.​

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Most of the things he gained and lost, are now hazy memories. A how the hell was that real kind of memory. Kind of like how we think about those first few weeks of covid lockdown. Did that actually happen? Did I literally wipe down every single thing that came into my home? 

When I think about JB… Did he really run in the sand? Did he actually walk the halls? Did he use to hug without me having to hold up his arms? Looking at JB now it just seems like a surreal reality that we once had. 

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When we were filming last weekend, it was like a party. So much laughter, some vending machine shenanigans, people trading stories, and sharing exciting plans that they had coming up. And there is always the quick brain dumps of what we are finding useful at the moment, to navigate life with Duchenne .

I was recounting a story about JB and his less than supportive game viewing of Caroline as a field hockey goalie. The story is…it was one of those days. It was an away game. Good thing about away games are the accessible stands (maybe Dover Sherborn will catch up one of these days). The bad thing about away games is also ... the accessible stands.

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Listen, I am not always a positive fan. When I used to film Caroline, well, you could hear me swearing softly if something went wrong. A goalie’s mother is not an easy thing to be!  There are stressful moments for me, there is pacing, there are hoods over my head and ok sometimes over my eyes. What can I say, I am a Woelfel. I am not a ref asking you to leave a high school basketball game Woelfel but still. Anyway, JB, is a lot more vocal than he should be. At home games, JB keeps his distance from the field a bit, there is no birds eye view. There is also some distance from the other spectators, except a select crew that have grown accustom to his “passion”. There is also no metal to clank his metal water bottle against. This away game we were in the stands, birds eye view,  with all the other spectators, including a mom who I went to elementary and high school with. Her parents also happened to be there. I had not seen them in years and boy did we put on a good show that day. A real, look how great my kids are, my life is totally under control kind of show.

Anyway, Caroline let a goal in, which as we all know, happens.  She is last line of defense, the ball went through plenty of people and all that, but JB, was not in that mindset, let's just say. He yelled, I may be blacking out if he swore or not, and he pushed his metal water bottle off of his desk onto the metal stands. Kind of like that spike he used to do with a football in alumni stadium. It was very, very loud. I kicked him out of the stands and he took himself, in his power chair, to the opposite end of the field where Caroline was not in goal.

​I should also mention that Caroline came off the field in a less than upbeat mood and was even more less than pleased that she had to join a car full of people in my car for a ride home. I still contend that I did not know she would be getting a ride home with me! The kind aforementioned friend's parents caught that little interaction as well.

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So, I am recounting part of the story, I say he THREW his water bottle on the ground. His defense last weekend to the group…I can’t throw anything. Said with his mischievous little smirk. We all burst out laughing.  We also were laughing at what the average person would think walking by the vending machine as there were 4 DMD kids with 3 power chairs and one scooter, raiding a vending machine with no caregiver in sight. I am still not really clear on the story but they had cash and a credit card, the machine was broken, but they still came back with stuff, a lot of stuff!  This might sound downright crazy to laugh at things like this.  But this is what we do. We take what is an unfair and unnatural life and ... laugh. We were all having so much fun, the film crew had to remind us to talk about the harsh reality of Duchenne. I am sure this is some sort of defense mechanism for all of us, I know it is for me,  but we often focus on all the positives to drown out the harshness this disease. ​

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This is why, I do not like to think much about it.  When I slow down and actually think… it is heart wrenching, it is devastating and it certainly doesn't lend to laughter. And if you don’t laugh, you cry and you cant do that all the time. Its just tiring, you get a headache, you get dehydrated, everyone asks you if you are ok. The whole thing just sucks.  So, I try not to do the thinking or the crying much. But, it does indeed happen from time to time and when I do it is incredibly hard.  
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Why is it so hard? 

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Because in the last decade, there has just been so much to deal with.  JB has participated in three clinical trials and two studies. He has been in a partial inpatient program for mental heath issues. There are sleep studies, cardiac MRIs and on and on. In the past year alone he has spent well over a full month of days at the Duchenne clinic at UMass. I tried to think of how many PT appointments he had shared with a particular member of the audience who happens to be celebrating a big birthday today. I came up with an estimate of over 400. He has academic challenges, social insecurity and more. He puts on a brave face a fair amount of the the time, but he gets angry. He is angry that he can not be like his classmates. He wants to play lacrosse. He wants what everyone else in 8th grade wants, to just blend in. There is no blending in when you are in a power wheelchair.  Perhaps thats why he gets angry at things he should not be angry at, like his sisters performance on the field. Just like laughing is easier is than crying, being angry is easier than being sad. His life can be hard. It can be exhausting and frustrating. 

Everything JB has gone through changes what the goals and dreams are, and also what the goals of JB’s Keys are a little bit. When I stood up at our first event I was hopeful, so god damn hopeful.

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There are a lot of amazing people, some right here in this room who are working tirelessly every day to cure this disease, and I am beyond grateful. I know so many younger boys with DMD will reap the most benefits. They are doing it, they are changing the outcome of the disease progression which was at one time unimaginable. It is amazing!  But, JB still has his lifetime, 14 years battling this disease. Of course many others have been in this far longer.  The battle, and all that it encompasses, changes the person with Duchenne, changes their families and changes what the goals are. I once imagined that JB would walk around a college campus, well, that is just not going happening.  So many dreams, so many goals you may envision for your child is just not achievable for JB. Or at least not in the way you hoped. 

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I imagine that this sounds depressing to some, and to others it may seem that I might be giving up. But, in actuality, it is, in a way, freeing.  While the biotechs work on treatments we are free to focus on what we should be as a family. As I accept more of what JB’s reality is and most likely will be, we focus on the here and now. We focus on what he can do and not always wishing for what he is NOT able to do. There is more time and energy put into things like adaptive sports and theater. There is maybe skipping a day of stretching to go on a hike. And there is joy in finding amusing you tube videos and “new  to JB” comedians to watch. A Cheech & Chong skit is always a hit. There is celebration over finding out you get to go to camp for 2 sessions this summer.  

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I sure hope the treatments that are here now, and those that are coming give JB the best quality of life possible. But, I no longer think of a “cure”. I think about what is going to keep him the healthiest and the happiest he can be. Healthiest, so the treatments will positively impact him, and so he is comfortable and thriving as much as he can each day. Happiest, because isn’t that the best way to live? Isn’t that what the last couple years have given all of us, regardless of Duchenne? It has given us perspective. A global pandemic can do that. It give you perspective and realize all you want for yourself and those you love is to be as healthy and happy as possible.  That is what JB’s keys is focused on as well, for people living with Duchenne and their families. And this…is  where you all come in. 

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Your support directly impacts so many living with Duchenne to be the healthiest and happiest they can be. As for healthiest, your dollars go to the UMASS Duchenne Clinic that is a top medical facility for Duchenne. It provides coordinated care and year round support for DMD patients as well as having 6 active clinical trials, one which JB is participating in.  It also goes to help families directly in financial need. The cost burden of having a child with Duchenne is immense. Your dollars go to expenses not covered by insurance. There have been families who needed help with van payments, or a home renovation. We are also working with REQ, the area’s most complete source of home medical equipment and services, to put together a virtual loan closet for equipment. There is nothing worse for example, than having something happen to your ambulatory child, like a broken leg, and getting home to realize you have nothing of what you need. This will help with that, by having wheelchairs, lifts and other devices available to loan out.  

Your support also goes a long way toward many research projects we support that are focused on improving a healthier quality of life. For instance we helped fund a cardiac initiative that focused on innovative ideas that will lead to substantial improvement in the care and treatment of Duchenne cardiomyopathy. We also are looking towards improving the mental health care of people living with Duchenne by supporting national conferences like the one put on by Parent Project Muscular Dystrophy. As everyone knows who has dealt with mental health issues in their families, Duchenne or not, it can be way harder than any physical issues. Once an overlooked aspect in Duchenne, it is not getting the attention in needs.

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As for happiest, we got that covered. Our educational scholarship program is flourishing with six $2,500 scholarships given out to young men this academic year pursuing their education after high school. These scholarships can go to not only tuition, but to the other expenses a young man with Duchenne attending College incurs, like personal care or transportation. I can assure these young men are happy at college, I got a pretty awesome photo of Jake Marrazzo from his mom last weekend being a typical college kid.  And they and their parents are happy with the assistance as well. 

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We continue our robust adaptive recreation program and are looking to expand. The joy families get from enjoying their children in a way outside of the grind of doctors and home care, is truly priceless. We continue our adaptive sailing and adaptive skiing programs. Last winter, without being able to send families to ski we were able to give out thirty grants worth $500 each that went directly to people living with Duchenne in New England. They were instructed to use them as they want, to make covid winter life…better….and they did. From legos to sleds and virtual reality goggles, they were used with the exact intent they were given.  We now own a terrain hopper, an all terrain vehicle that can tackle any beach and most mountains. Many families have utilized it to maximize their outdoor experience with their family member who has DMD.  We are now being approached by families and supporters with more recreational opportunities that we just do not want to say no to, so we need your help to say yes. From looking into different weekends away for fishing and exploring, to the exciting sport of volt hockey we want to be there, and with your help we will be. ​

I am deeply grateful for your support and the support of so many who could not be in attendance in person tonight. With your help, we are able to meet the Duchenne community where we see the greatest need. 
I invite you to take in the video below and celebrate being as healthy and happy as we can. 
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living in the moment is hard

12/30/2021

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Each Christmas for the past five years I give my kids the same gift. I pick out a photo of them over the course of the year that I feel embodies them. I also write them a letter about what they have done over the last year and some hopes I have for them for the next year. Caroline’s was easy to find this Christmas. As soon as I saw the photo a couple months before I knew that was the one. JB’s on the other hand was not easy this year. The reason it was not easy was because I had so few photos of him! 

I just got in from a walk up here at Loon. It is a beautiful winter day and I walked with just a sweatshirt on. I knew I was going to write something today and wanted to get my thoughts in order. As much as my thoughts are ever in order that is. I kept going back to why I didn’t have many photos of JB this past year. Yes there were less activities and gatherings this year, especially last spring. But, I realized that it was actually more something with me. 

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I have been increasingly looking to what the next step is instead of living in the moment. I didn’t take photos because I am not taking the time to enjoy what is happening. I think it is partially because of covid. Most of us fell into the thought process of when this is over, when the kids go back to school full time, when we have the vaccine, when our kids can get the vaccine, when we don’t have to wear masks and so on. I mean, how could we not wish these awful times behind us? 
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But, I have found myself in this mindset about other things in my life too. I am focusing more on getting to or through x,y, and z. I am thinking that when I get to or get through whatever it is, life will be easier. There is…when Caroline gets her license, when we get through JB’s musical, when I get through the holidays, and many more! Obviously this is not a good way to go through life but when you are living with someone who has a life limiting disease it is compounded. 

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​It is compounded because living in the moment can be hard. The feelings I have when I quiet my brain are difficult for me at times. When I sat to watch JB in the musical a few weeks ago, I really focused on him. I watched as he did a wonderful job up on stage. I was proud of the work he had done and how he doesn’t let DMD get in the way of doing some of the things he likes to do. But I was also so sad, I was sad for him that he has so many more challenges than the other members of the cast. I was sad he can’t dance. I was sad that he couldn’t do a proper bow at the end of the show. I was sad that JB has Duchenne. 

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Although I am not much for new Years Resolutions, I will give myself a goal for 2022. It is to live more in the present, even with the difficult feelings it brings up…and to take more photos!

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As for the photo I picked for JB this year, here it is. It is as he is leaving Powisset Farm for Reach The Peak. I realize, this photo is as much for me as it is for him. What I wrote to him I need to take to heart too: “You look like you do not have a care in the world when in fact you had just had a really rough day. This photo doesn’t show the struggle you had leading up to this moment. It doesn’t show the angst you had watching your sister put it all on the field to come out with a big loss. It doesn't show the days we spent juggling schedules to make that happen. What it does show is that you did it. That you were able to exhibit flexibility. It wasn’t always smooth but you did it! We made it to the top with your friends! ”

I need to take in the joy of the moment, like JB is here. Forget all the work it takes to get to something, forget about what has to be done next. I need to be proud and happy that I got to the moments. Because, that hike was a good moment and there are so many others that bring smiles like this to our faces. 

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turning 14, what else can jb carrry

9/14/2021

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Here it is: the day before JB’s Birthday and I am reminded that I need to give our supporters a well deserved update! As is typical around his birthday, I am torn between wanting to provide JB the best celebrations possible and my own feelings around him getting older. JB getting older could mean the progression of Duchenne. 
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No matter my feelings, we celebrate!  First, his Duchenne soccer friends had a post practice cupcake gathering. Then, a family dinner while watching what Mac Jones can do for the Pats. Finally, JB is having a couple friends over for an outdoor movie. 

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Thankfully, the world is in a better place this birthday than it was for the last one. I am happy to report that JB had much more of a typical summer. There were weekly sails, days on the beach and a week at Camp Jabberwocky. After missing out on so much, it was wonderful to have some happy and fun times. 

​This summer also included doctors appointments. There were typical clinic visits, neuropsych testing and many trips to UMass for the screening and then the beginning of a clinical trial. I am thankful that he was able to be enrolled in this promising trial! You can check out the trial information
HERE. Now, we juggle day-long visits every other week for infusions and attempt to keep JB’s life as typical as possible.
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As many of you may remember JB faced enormous mental health challenges the last time he was enrolled in a clinical trial. His anxiety reached debilitating levels and he withdrew from the trial. As we considered this new trial, JB was completely involved in the decision making process. He studied the schedule of the trial visits and what each visit entails. He asked questions and we made the decision together. 

One big factor in him agreeing to enroll is that he has friends who were already in the trial. Aside from that, we also talked about what will be different with this trial vs. the last one. We talked about the ease of getting to UMass vs. MGH. We talked about getting the infusions right in the clinic he visits regularly vs being in a hospital room and how that feels. Mostly though, we talked about how he has changed. How in four years, with the help of so many, he has built up tools that help him carry himself in a way that he can handle this trial.

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On a quiet rainy Sunday a couple weeks ago while watching CBS Sunday Morning  and drinking coffee, I was going through photos on my computer and came across a couple where I am carrying JB.  It started me thinking about how JB moves around this world, how he used to move around the world, and what my role is in that. 

It led me to thoughts and questions about the literal and figurative meaning of carrying:
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1. Life was so much easier when I could just pick him up and carry him around.
2. I wish I could still carry him. 
3. How does he emotionally carry himself better than he used to? 
4. In what ways should I stop physically and emotionally carrying him now?
5. How do I help him carry even more himself, so he succeeds in life the way he wants?
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Number 1 and number 2 would be very easy to get stuck on...but the soothing tones of CBS Sunday Morning allowed me to quickly move onto number 3.  For number 3, I thought about our discussions over the summer when we weighed the trial and  how he can emotionally carry himself better now. Part of this is being four years older, but it is also the work he has put in to be able to share his feelings in a mature way (most of the time). 

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Number 4 is a lot to think about!  Balancing needed help and unnecessary enabling is such a struggle for me and assume most parents of children with disabilities. He absolutely has made progress in many ways, but are there more ways he could carry himself better?! What ways should I stop carrying him so he lives up to his potential physically, emotionally and socially.  

For this I needed to first think of why things are carried for him. Obviously there are some things he needs done for him like bundle up from the rain to watch a lacrosse game, but others are not. Some are a result of me wanting things done faster or more effectively than JB would do it.  Some others are a result of JB not wanting to take the time to do them himself. The majority are not physical tasks, but situations where his attitude or behavior should be expected to be at a different level. The challenges of Duchenne are sometimes so great that behaviors slide because....it is just easier! 
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If I want him to go off to college in 5 years, he has a way to go. As one DMD mother told me about their son who is a freshman in college, “He is basically running a small business in coordinating all the support he needs”. A small business! We have our work cut out for us!

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 Number 5, how do I help him carry more for himself?

For the things that are a result of me wanting tasks done faster or more effectively than JB would do them:
I have to accept that it is more important for him to do them on his own, than to have things done perfectly. There may be some interesting discussions at the dentist the next time he goes as his teeth won’t be quite as clean as they were when I brushed them myself. I am sure there will be missed drama meetings, as I am not checking his email daily. I have to do less checking up on him, so he can realize what he needs to do on his own to succeed in the way he wants to. 

The items that are a result of JB not wanting to take the time to do them himself: 
He needs to accept that taking an extra minute away from what you WANT to be doing is what is NEEDED from him to grow. He is more than capable of bringing his dishes to the counter but he has to take the time to put his chair up to counter level. 

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As for the bulk of the items, where his attitude or behavior needs adjustment:
This will be the most difficult work for both of us. It takes JB realizing his attitude and behavior is not helping him and then him wanting to change it. It takes me following through. Man, why is following through such a hard part of parenting!? 

If you were in the unfortunate situation of being at our house on Sunday for the Pats game you would have seen that there is indeed work to be done as you would have thought he had a million dollars on the game the way he acted!

Here are examples of just 2 situations that show how we are working on this. If he yells for me from a different room I just say “you are on motorized wheels, you come here and ask me.”  Although he may think a few minutes away from Xbox will be the end of the world, I assure him it is not!  Another situation when he complained recently was when some people in the lunch room wouldn’t move out of his way. I asked “did you raise your chair so you were eye level with your classmates?'' He said no, and that “they should just move.” I said “no you should look them in the eye and ask them nicely to please move.” Just because he is in a power wheelchair, living with Duchenne does not mean he can be entitled and rude. 

So, as he embarks on his 14th year, wish us luck as we work to get him to carry more in his life so he can succeed in the world the way he wants and deserves!

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welcome video, pivot

6/4/2021

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The month of May got busy. The fundraiser, combined with spring activities returning to "normal" did not leave much time for a new blog post.

In a few weeks JB will be answering all the questions we got from you in April, promise!

For now, here is the welcome video from our online campaign and auction. In it I use one of the most overused terms of the past year, "pivot", to share an update on JB and JB's Keys. If you want to know the latest please watch! 
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a new voice is heard

4/30/2021

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PictureJB with his sister Caroline this morning protesting going to school.
With only hours to spare here is the April blog post. As promised, I am happy to bring you a new voice.....from the one and only JB Harvey.  Since JB convinced me he does enough writing in school we agreed on a short interview. 

The best part is that JB is willing to answer more questions in next month's blog FROM YOU! So, leave them in the comments here or look out for places to ask on our social media. From silly to serious and everything in between, ask away! 

In the meantime I hope you enjoy learning a little more about JB. We will work on him expanding his answers for your questions!

If you could eat only one food for the rest of your life what would it be?
Pizza because it's my favorite. I would like to also have mozzarella sticks but if its just one, pizza. 

What is one benefit of having Duchenne?
Skiing with NEDS. I really like the coaches. This season my favorite lessons were in the Tetraski because I could control the ski independently. 

What do you think of the Patriots drafting Mac Jones?
I just hope he can perform and be better than Cam Newton.

What is the worst smelling lunch at school?
The Korean BBQ Pork. It smells awful! (Mom edited that last word to be more reader friendly) 

What is a hard thing about having Duchenne?
That I have to ask people to help me everyday with lots of things.

If you could live anywhere in the world where would it be?
Someplace warm, but then I can't ski. I guess I like where I live.

If you could be an animal what kind of animal would you be?
A dog because you get fed and you don't have to go to school.

What is your favorite thing to watch on YouTube right now?
Dude Perfect because they have fun sports stuff.

Who makes you laugh the most?
My friends make me laugh a lot at school and on xbox.


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strong unexpected fires

3/27/2021

8 Comments

 
PictureJB on the big screen
A quick update from last month. JB and his friends did a great job in Zoomsical. Thanks to all that made that happen! ​My plan for this month’s post was to bring you a new voice. But then something happened the other day that had me thinking back to what I wrote about the slow burn that I wanted to share. I promise to bring you a new voice next month, but, for now you will have to deal with me again. 
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As you know, I equate having someone with Duchenne in your life to a “slow burn”. I talked about how Duchenne is just a grind, a steady stream of loss of muscle function, appointments, medication, and more. ​

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Something I did not mention that adds to this slow burn is the unexpected strong fires that shoot through you. They happen when you are trying to quietly live your life. They are short strong fires that fizzle relatively quickly but absolutely add to that ever present slow burn. 
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Some of these strong short fires come from within you and some from outside sources. There has been a fair amount of activity recently that would fall into the category of fires from the outside affecting my feelings about JB and Duchenne. But, the one I am going to share is one that came from within me. And like they so often do, it came with no warning.

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As one manages day-to-day life caring for someone with a condition like Duchenne, there are times that it feels as though you have forgotten why you are doing all the things you are doing. Forget? You may find that impossible to believe. But it is true. You know your child needs so much including therapies, assistance bathing, a hospital bed, an IEP, a BiPAP, and more. But there are moments, sometimes even a whole glorious day when you do not process the reason why they need all of that. You just do it, you are on autopilot. ​
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But then there you are, minding your own business of flying a plane (you may as well be since you are juggling so many things) and you are stopped, a fire has started. ​

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Last Monday I had purposefully made no plans while the kids were at school. I was going to get the house together, work, and enjoy a peaceful  house. I had no plans to meet a friend for a walk. No calls at a specific time. I just had 6 hours to myself. As soon as I got home from school drop off I felt off.

As I have also talked about in this blog, this sensation is a feeling of unbalance. I felt antsy. I  felt like I was crawling out of my skin. I double checked the latte I just picked up at Starbucks and it was the same one I always get, no extra caffeine there. 

I started picking up the house. I made it look like the weekend hadn’t happened. All the kids’ bags and activities were put away. Laundry and dishes started. I sat down to work but couldn’t concentrate so moved to cooking. I made soup with leftovers and prepped dinner. Dinner, per JB’s request that morning, was chicken parmesan. Yes, he thinks I operate like a restaurant and you put your order in. Since I did have the time that day I agreed. After cooking I still felt uneasy and agitated. I then moved to my next idea to get rid of being unsettled, working out. 

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​That day I decided on a 60 min Peloton ride with one of my favorite instructors (yes, I have one and yes, I love it). Quick shout out to Peloton, their Comeback Program, and my friend who helped me get a free bike!

​The goal of the ride was to get rid of this weird feeling I had. That is not what happened. I started the ride and tried to fully immerse myself in it, but I always have a hard time doing that. I am thinking of a million different things. I end up adding stuff to my list on my phone or texting someone. So my head is spinning (see what I did there),  but just the normal thinking about what errands I need to do, what kid needs what done etc. Then right around the midway point of the ride I start crying. 


Yep, crying, a middle aged peloton rider in the middle of her bedroom crying listening to Miley Cyrus sing “The Climb”. At least it is a somewhat moving song but certainly not worth crying over.  It took me by surprise, why the hell was I crying? Then I realized...I am crying because JB has Duchenne, because his life is hard, because his life is going to get harder, because it impacts all of our lives, because I am tired, because I am unsure if I can keep doing this everyday. Just because. 

I cried through a song or two as I pedaled. By the time Starships by Nicki Minaj came on near the end I was feeling better. I mean, I cannot hear that song and not smile thinking about Pitch Perfect.  I followed the class with a quick 10 min ride with another favorite instructor when I saw his ride had an old Whitney Houston song on it. He adores Whitney and I love hearing him talk about it with excitement. ​

So, I got through the workout. I had gotten rid of the antsy feeling but I was now left for the day with what was really bothering me, Duchenne. It just popped up out of nowhere. A fire that was strong and now I had to deal with it. There are sometimes easy fixes to deal with those fires. For me that is usually being busy, but as I said I had nothing to do for hours. I could meet a friend and get distracted but there was the chance that I wouldn’t be able to listen to other’s challenges without becoming annoyed. That could push me further down the hole. 

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I decided I was going to just sit with the sadness a bit for the day. Not a climb into bed all day, call someone to pick up the kids kind of sadness day (those have happened), but a day to just acknowledge the sadness. To throw away the to do list. To not finish the laundry or dishes. To take the dog for a walk while listening to a funny podcast (a little not in season but check out It’s A Wonderful Lie). To feed the kids early and to sit on the couch with a glass of wine watching Bravo. To ask for my daughter to put JB to bed. To tell a friend that I am sad. To tell a DMD mom friend you are irate at DMD today. To eat cheese PopCorners. To cry. Just, to be sad. 

The next morning I woke up ready for another day.  Although my daughter never agrees with my timing in the morning (she thinks we are always going to be late), I got everyone where they needed to be with plenty of time. I was ready to put the sadness away.  I am glad I had plans that next day. I was ready for distractions and ready to get that to do list done.  
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But, I did have a mild headache all day. I know it was from being dehydrated from crying, drinking wine and eating salty snacks but it made me think about the day before. How that day before, that small fire, that bad DMD day has a lasting effect. How it gets added to the whole picture of the slow burn.

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rare disease day & the common teenager

2/24/2021

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Rare Disease Day is always on the last day of February each year. Duchenne Muscular Dystrophy is one of many Rare Diseases affecting approximately only one in thirty five hundred boys born the world over. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

In honor of this day JB’s Keys is pleased to sponsor an event put on by fellow Massachusetts organization, Jett Foundation. We are proud to be joining other sponsors such as Pfizer, Vertex, Solid Biosciences, Casmir and FibroGen. This is Jett’s 4th Annual Rare Disease Day event.

This year, they will celebrate this special day with community ambassadors, Duchenne medical professionals, rare disease researchers and more who will be sharing personal stories about persevering through and overcoming challenges caused by COVID-19.  


We hope many of our supporters will join Jett TOMORROW AT 2PM. 
For more information visit this site . 

As I continue my attempt to keep up my blog posting I used Rare Disease Day as a jumping off point as I sat down to write. I first went to thinking about how isolating and you know, rare, living with a rare disease can be. But, then I got stuck on a fact I read on the Rare Disease Day website.  One in twenty people will live with a rare disease at some point in their lives. That makes it fairly likely that an individual will live with one of the over six thousand identified rare diseases. It should not feel isolating as there are many people living with a rare disease.  It is in fact common to be living with a rare disease.

All those individuals living with rare diseases are so much more than the diagnosis they have. They are not really rare individuals themselves, they just happen to have a rare disease. They are the same as people not living with a rare disease. 

There is certainly a list of items that makes JB unique because of Duchenne. These are differences I have already shared like the stretching, AFOs, cough assist, power chair, bi-pap and all of that. But, that is just a small part of who JB is. I can not deny that Duchenne permeates through most aspects of his daily life but more than anything he is just a typical, common and ordinary teenager. 

What does a typical, common and ordinary teenager look like? Well, it includes an addiction to xbox, a heightened sense of competition, a use of explicit language and strong complaints about school work. 

It isn't all bad though. It also means that JB is starting to find places he feels he belongs and what he is passionate about. That means on the mountain in the tetra ski.

It also means on stage performing which leads me to 
a shameless plug! 

JB and his friends have been working since September filming a musical movie, Zoomsical,  from their homes. From what I have seen and heard it should be awesome! It includes performances of some of our favorite songs from hit musicals. It is a funny, real, foot tapping show. The show’s length is about 1 hour, and is appropriate for all ages!

If you are local you can join JB  in person at the Drive-In for the World Premiere this weekend.

Catch the show at one of these three times: 
-Friday, February 26th at 7:30pm 
-Saturday, February 27th at 5:30pm or 7:30pm
 
If you are not local you can still catch the show by streaming the show starting on the actual Rare Disease Day, Sunday February 28th.  

For more information, to see the trailer and to buy tickets click here! 

On this Rare Disease Day I hope you can not only join tomorrow morning recognizing the day with Jett but also celebrate a common teenager who has found a place of belonging in the theater. 
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to unbalanced days ahead

12/28/2020

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PictureJB and Caroline with the "real Santa" on December 19th, 2008

A little over a week ago I posted this photo on Facebook with the message “It is one of my favorites from when they were little, with the “real Santa”. A lot changed in the weeks after this photo was taken.”
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I am not sure how many of my Facebook friends know what I was referring to when I say a lot changed. There are a few reasons for that. One, like so many of us, some of my Facebook friends are not really all that close to me. It could be we haven’t been in touch since elementary school or we were just connected because we are in the same online mother’s group. Another reason is that the number of my Facebook friends has grown exponentially in the past decade or so. Those people didn't even know me when this photo was taken. Part of the expansion of friends is that parents who have children with challenges like JB are always making groups for different areas of need. I was so sad when I realized JB was too old for me to be in the “Duchenne Under 10” Group. I liked the things people posted and I loved that I could put JB in that category with so much time ahead of him!

The last reason is I don’t talk about that time very much anymore. It is an overused expression but it really feels like that was a different lifetime.  That photo was taken days before JB got bloodwork taken that showed his CPK (creatine phosphokinase) level was extraordinarily high. And it was a couple weeks before he was given the diagnosis of Duchenne Muscular Dystrophy. 

The day of that photo is one of the last days of blissful ignorance. I was ignorant to what the future would hold for JB. I remember thinking that when he sees this picture as a teenager he would be embarrassed that I made him wear a red velvet jumper. I pictured him as a cocky athletic teenager giving me lip about how uncool that outfit was. I might get him and Caroline to laugh at how they thought the Santa at The Dedham Club was the “real Santa”. They thought the ones in the mall and other places were just helpers but this Santa was the real one. 

Picture That Christmas morning
The time between this photo and JB’s official diagnosis on January 8th, 2009 was surreal. I tried to figure out what it meant that my little boy's CPK level was at 14,794 when the normal range is under 175. Then, I quickly decided I actually did not want to know what it meant. For someone who now mostly faces things head on, I was able to put that information away. We received those lab results on December 23rd and went back in for genetic testing the same day. I managed to keep myself immersed in putting on the best Christmas for my two toddlers. Christmas has always been my favorite holiday and I relished enjoying it with my kids.  I remember people talking around me about what the lab tests could mean and it sounded like the adults in the Peanut cartoons.

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PictureJB at that time
Like most things in life, you can only ignore reality for so long. The specialist at Childrens would not give us the results of the genetic testing over the phone but knowing how stressed we were our kind pediatrician told us that JB had Duchenne. He then came over to our house, (yes you read that right!). He was the first of so many people who went above and beyond what they were expected to do on JB’s Duchenne journey.

Understandably, I had never felt the way I did the day I received the diagnosis. It felt a profound sense of loss. Even though your child is still right there and looking as healthy and perfect as ever, it feels as though you are losing them.  It is a loss of the future you expected for your child. A loss of normalcy. A loss of innocence.  A loss of your footing. That is what I felt the most. I just felt unbalanced. 

From that day on you never quite have the same footing ever again. There are days when you feel more balanced than others. There are days your child seems to be as typical as any other kid. But, the knowledge that he isn’t leaves you unable to hold steady. There is always something that needs to be done, needs to be thought about or needs to be researched. Duchenne pervades every aspect of your and your child’s life. 

PictureJB gearing up for skiing
But, as we turn towards what has to be a brighter year I try to focus on what you do with those unbalanced, unsteady days. Covid has sure made them even more off balance. Even though Duchenne is present in JB’s life at all times it has not diminished his laughs or his opportunities. They are just sometimes different laughs and different opportunities. 

Different laughs like the biggest laugh of yesterday was talking about if people in wheelchairs with limited mobility could be strippers. (I swear I took away Grand Theft Auto very quickly after I found out about the strip clubs back in July!) We landed on the fact that they may need someone to help them, just not a parent because that would be weird.  Last week he got into the car and said “Man my dogs are barking, which is weird since I don’t walk”. This may sound sad but it is actually how he manages. He finds these things hilarious and he says he will remember these jokes for his “sit-down” comedy act he is working on. 

Different opportunities like being a member of the BC football team. He was so pumped to see that AJ Dillon scored 2 touchdowns yesterday! The last two days he has enjoyed adaptive skiing at New England Adaptive Sports. Sure, he is not exactly the kid I envisioned when I took that picture with the “real Santa'' but he is getting after it. He may not be popping on his skis by himself and hitting the slopes solo but he is out there with some amazing family and friends having a blast being an athlete.

Here is to 2021 and taking advantage of different laughs and different experiences in every unbalanced day! 

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cheerleading vs. the slow burn

10/21/2020

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When JB was struggling with his mental health three years ago, I spent time with his therapist learning what JB needed to hear from me to process his diagnosis better. I learned that I had only been talking about all the good things that were happening to JB as a result of his diagnosis. I was solely focused on the adaptive sports, make-a-wish trips and meeting famous athletes.  

In my attempt to keep everyone positive, as well as protecting myself, I had become like a cheerleader cheering for a team that was going to lose no matter what. Sure it is nice they are still there cheering, but the team is saying to themselves when is that cheerleader going to shut up and realize there is nothing they can do to change the outcome of this terrible game. JB needed for me to stop telling him how great his life is because of Duchenne and allow us space as a family to admit that there is SO much that goes along with this diagnosis that is not good. All the adaptive sports, make-a-wish trips and meeting famous athletes can not erase the monumental struggles JB faces. 

That intro is a warning to you that this is not an uplifting post. There is not much cheerleader attitude in this one! 

I consider myself to be good in emergencies. I don’t panic at all. I often am the opposite of panic. I go into a bizarrely calm state. I can disconnect from the situation. I make decisions quickly and decisively. I do this while making light of the situation with the person who is in crisis and connecting with others around. I might chat up an ambulance driver or try to make a joke with an ER doctor. Needless to say, I think I am a pretty good candidate for anyone’s crisis squad. 

Over the course of the years there have been a fair amount of crisis situations with JB. From falls, to mental health breakdowns and emergency appendectomies . All of those I have handled with that calm. I also can not underestimate the strong support that my family is in these crises! 

But what I want to talk about is the impact of adrenaline and other hormones that are released during these situations. For some it makes them hyper and out of control but for others, like me, it gives me the power to deal with anything in front of me with quiet strength. It  works to help me maneuver the crises while not allowing JB to get too anxious. 

The “problem” so to speak with Duchenne is that it is not always a crisis situation. It is what I think of as a slow burn. This slow burn offers no adrenaline. 

The slow burn is the loss of muscle function over time, the stress of remodeling your house and the angst of getting new equipment. It is the daily grind of lifting, stretching, bathing, toileting and managing your child with Duchenne. It is the juggling of doctors appointments, sleep studies, prescription refills, IEPs, maintenance on wheelchairs and more! 

I would like to reiterate that the slow burn offers no adrenaline...at all! 

There is nothing triggered in your body that helps you somehow rise above. There is often nothing to “fix”, nothing to “decide”, no “action” to take. It is just a quiet smoldering fire that sucks the energy out of you. 

I mostly feel like I have control over the burn. I manage to throw some water at things that need it to keep it at bay. Not all days are perfect. There are certainly days that everything that should be done for JB isn’t. But, those days are usually ones where he has been enjoying life too much to have the time to stretch, use the stander, or cough assist so I let it go. 

A few weeks ago the burn was not under control!  That is the thing about the slow burn, you can forget how hot and dangerous it can be. You are not aware that a new piece of information adds to the burn in a way that can put you over the edge. One phone conversation with a doctor  about a new piece of equipment needed can leave you thinking about the cold, hard, unchanging facts about Duchenne that you can not cheerlead away.  It can leave you crying those ugly, dry-heaving cries behind closed doors because your kids are home again due to one of the many Monday Fall Holidays . 

As part of JB’s full Duchenne visit in late summer he had a sleep study the first week of September. During the study it was clear that JB barely slept at all. He was up, as he often is these days, a few times asking to be repositioned. He was snoring frequently as well. I chalked this up to this is just how he sleeps now, no big deal.

When I received a call from the pulmonologist to get the sleep study results, I was met with the fact behind why JB has been sleeping so poorly. His lungs just are not working as well as they were before. It explains him waking up, his fatigue during the day and even the morning headaches that have been happening more frequently.

I immediately go back to the day JB was diagnosed with DMD. The three things I remember about what the progression of the disease the doctor outlined was:
1)Around 10-12 he will lose the ability to walk 
2) In his teen years his smooth muscles, his lungs and heart will be affected
3) He will succumb to these complications in his early twenties

And here it is, playing all out as they said. In that moment I could not think about how much therapy and medicine has progressed since JB’s diagnosis. I could not remember any of the good things that I used to say as the cheerleader. I just heard those 3 daunting facts I was told over a decade ago on repeat in my head.

So that day the slow burn gets out of control. There is no adrenaline to help you find water to throw at it. It just burns away. And the day is hard. The few days after that are just as hard.  

Then you settle. You get more information from your Duchenne support team. That support includes doctors, nurses and DMD parents. You learn that the intervention JB needs, a BiPAP, is something that could be the only intervention he needs for over a decade. The days get easier again. You manage to start finding the strength in yourself to water down some of the slow burn again. The BiPAP he needs and why he needs it is added to the fire but you can keep it under control.  

You get JB very reluctantly back to the sleep study lab. (Thank goodness he had a buddy doing a sleep study that night, it helped so much!) You have the same sleep study tech you had 4 weeks prior. It is ok. He puts the mask on and immediately starts taking deep easy breaths. He loves it. He is laughing because he is so comfortable. He doesn’t wake up during the night to get adjusted. I hear no snoring.  As we are leaving in the morning he says “Mom, I feel like a million bucks!” 

The slow burn is grueling. But, knowing that there are somewhat simple interventions that can make a positive difference is what you need to focus on to keep going. 
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JB smiling through his anxiety in December 2017. The red around his mouth is from licking and chewing on his clothes.

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JB in the summer of 2018. There had been a major fall that broke three front teeth and two separate leg fractures in less than two months.

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How it feels to be a special needs parent handling the slow burn.

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JB last week, October 2020, showing of this teeth fixed after over two years of issues after a fall in 2018

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JB enjoying soccer with his friends recently.
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jb is a teenager

9/15/2020

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I am back to promising myself that I will share more regular updates about what is going on with JB and his journey with Duchenne, again. The excuse I will go with is that I have not had any time without children in six months. That excuse is not a very good one though since the amount of time Netflix has entertained me would show I probably had some free time on my hands!

Since it has been a while, this will be a long one. 

The last six months, pretty crazy times! They have wreaked havoc on our lives, our schedules and our emotions.  

The early days, kind of fun right? Kids home from school during the month of March which always feels interminable was nice.  There was lots of baking, board games, family movie nights, zoom cocktail hours and exchanging of funny memes.  The St Patrick’s Day online concert with the Dropkick Murphys, great. Watching Easter week services on the TV in sweats, not too bad. I was thinking we would get this wrapped up in a few weeks, for sure be back at school after April vacation. I believed a forced few weeks of home time is just what we all needed. We needed a break from driving around like crazy people to sports, theater, physical therapy, dentists, and doctors. I agreed that this was good for the kids to have some unstructured time. It was like life was back before all the technology. They were just playing outside and going on walks. 

But, as the weeks stretched into months the days were harder. We were told JB was at high risk and thus we continued to operate with the utmost caution.  That caution took over. The fun faded into anxiety about germs, procuring food, wiping down every item that came into the house and fighting with JB that you do not need a hot lunch every day. There were less board games and family movie nights, and more nights with the 3 of us in our separate spaces binging different shows or playing xbox. There were less zoom cocktail hours with people you haven't spoken to in a decade, and more reading Elin Hilderbrand. The folder on my browser filled with all these online experiences at museums and music sat with links unclicked. There were less days of I will teach the kids real life skills about money and the world, and more just get the crap turned in you need to for school. Don’t get me wrong, there were still some good moments. The mystery produce pick up once a week got me cooking some different things. The first take out after a couple months, so good! The funny memes and online content kept coming. 

By mid-June we had settled into a strange...wait for it....the most overused phrase of 2020…”new normal”.  Another overused word that is getting on my last nerve is “pivot”. We were in such a routine it was hard for my mind to “pivot”  to move to the cape for the summer. At home in Dover we see the same 10 people walk by a couple times a day with their dog, that’s it. At the Cape it was at first jarring to see so many people out and about enjoying life near Craigville Beach. Most with masks but it somehow felt almost reckless to be there. I was worried that the kids would have nothing to do. 

But, as the weather turned warmer I realized that perhaps it wasn’t a routine we were in but rather a funk. We needed a change, and thanks to Grammy and Peely (what the kids call my dad) we found it at Cape Cod! We were fortunate enough to spend days socially distant on the beach and evenings sitting on the deck enjoying the river view. There were sun filled boat rides and trips to the drive-in to watch sports. There were care packages from Camp Jabberwocky. The kids found some things to do. Caroline worked for a couple hours a day at the nearby tennis courts. In July, Spaulding Adaptive Sports offered adaptive lawn games and hiking in Brewster. JB absolutely loved it and it gave us a good excuse to explore other parts of the Cape.  All in all it was a great summer. Time with family and friends (at a distance outside) was wonderful. To feel connected to the world again is just what we all needed.

We were able to get in all of JB’s doctors appointments at UMass in August. We figured that in case covid got worse again, it was best to get everything in. As always, it was a long two days but we are so grateful to have such an amazing team so close to us. JB was a rockstar. We always manage to have some laughs even in stressful situations.

This next little story shows our somewhat twisted humor, but it works for us. 

A  middle aged man checking in was being asked the screening questions for covid:
Receptionist “Have you had a covid test?”
Patient: “A what test?”
Receptionist “A covid 19 test for the coronavirus.”
Patient “I don't know what that is but I have had a lot of tests recently.”
Receptionist “Sir, I am talking about covid 19, the coronavirus, you know the GLOBAL PANDEMIC!”
Patient “I still don’t know.”

Now, when anyone says covid 19 or coronavirus we say “you know, the GLOBAL PANDEMIC”.  

The best part of the visit was being able to connect in person with his team. It was nice to ask all the questions about the safety of returning to school. The 5 months since March had given them the time to see if DMD kids are more susceptible to covid 19 and what it looks like if they do get it. They were able to say to me and JB with confidence that if we take all the precautions the CDC is recommending he can go to school! We are still cautious but when he had to return to Worcester for a sleep study the following week, we ate outside at a restaurant for the first time. That felt really good!

Other takeaways from the appointments were overall he is doing well. His cardiac function is good. We need to add some stretches, which isn't great since we aren't going to PT because of covid, but manageable. For a DMD kid turning 13 he is in good shape!

There is a clinical trial that is coming to UMass that JB would qualify for. We are gathering all the information and JB will decide what he wants to do. Our past experiences with clinical trials have shown that he needs to be an active participant in the decision process. It is his body that is going through the tests and treatment and he needs to agree to what he is being asked. 

We were driving in the car back from Worcester and I asked him what he was thinking about joining the trial. We talked about how much time there would be away from school and what tests were involved. He was mulling it over and then said “I’m not sure I want to do it”. I said “OK, it is a lot and I understand”. He says “No, it’s not that. It’s that I'm just not sure I want to walk again or lose any of the great activities I can do because I have DMD”.  I couldn’t help but laugh. Perhaps I didn't explain exactly what the drug can do but it will not get him walking again. It could help with prevention of muscle scarring in his heart and other places. But, what an amazing outlook this kid has! He is truly happy with everything in his life. Even being in a power chair he likes his life the way it is. I am so pleased he can look at the world this way. 

All in all this has felt like the endless summer with a full beach day on September 12th!  As I write we are still awaiting the return to school. Our school district is doing a hybrid model starting today, September 15th. Caroline’s in person learning has been pushed back a week due to large gatherings over the weekend but JB will start in person!  JB asked if he could stay home because it was his birthday. My answer was NO!  I said you have not been in school in 6 months, we have spent every one of those days together you are going. If you have school you will be there. He is actually really excited to see some of his friends again after so long, even if they are in masks. 

So that just about catches everyone up. 

Now, the topic at hand, JB’s 13th birthday. I can not believe he will be a teenager. How did that happen!

Each birthday that comes provides the typical parent feelings of how did my little boy get so grown up and where did the time go yada yada. But when you have a child with DMD there are the added emotions of how many years have passed and how many years are left. What will those years look like? One can not dwell in that place very long though because if you do you are unable to give your child the birthday celebration(s) he deserves.  As much as I want to just not make a big deal about his birthday he wants to make a big deal about it, so that is what we will do!

The night of his birthday we are hitting up another fine dining restaurant establishment that is serving in a parking lot. On Friday JB is having a few friends over for a socially distanced outdoor movie party.  Then, on Saturday we are seeing our “DMD family” for an outdoor adventure. This week will be filled with first days of school during a pandemic, lots of friends, family, laughs, and maybe a few tears from me. 

In closing I want to say that at this difficult time we must balance the safety of our communities while we try to enjoy ourselves. When you have a child with a complex medical condition this is more difficult than it is in a typical family.  You need to keep them safe at all costs but also don't want to waste the time they have by staying inside all day, every day. I hope each one of us can keep the needs of others in mind before our own in the coming weeks and months. It would be a shame to miss out on the things that we could possibly enjoy because of some poor decisions by a few. 


I am now putting it in my calendar to have a post every month. Now we need to see if I can stick to it! ​
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JB doing one of his favorite things...boating
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JB walking Craig all by himself in the spring
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Tackling some remote learning
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Enjoying his time on the beach
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Nice views for dinners this summer
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Lots of family beach time
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Enjoying adaptive yard games with Spaulding
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Watching the Bruins and Celtics at the drive-in
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Care package from Camp Jaberwocky
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Endless summer beach day on September 12th
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    Beth Harvey, JB's mom and executive director of JB's Keys to DMD, lives in Dover, MA with her 2 children. In addition to JB, she has a daughter Caroline.  I try to keep a sense of humor and have fun, as I attempt to keep my head above water. 

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JB's Keys to DMD, Inc.

jb@jbskeys.org
Phone: 781-269-1175
P.O. Box 446
Dover, MA 02030
EIN 27-1060320
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