Now some thoughts from me and what JB is up to:
JB’s birthday is extraordinarily difficult for me. The passage of time is on full display with birthdays. There is no escaping in reflecting on past birthdays and predicting what the future holds for subsequent birthdays.
When I look back on the day JB turned two (the first birthday after he was diagnosed) I have, as I often do, a hodgepodge of emotions. Looking at his little face there is the joy, seeing that beautiful toddler with all the attention on him and a cake (albeit poorly made) for him to eat in front of him. There is confusion, mostly around that cake. I must have gotten the idea from somewhere but it was before their were how to videos! It is supposed to be a car by the way. There is despair, in knowing that there have been so many days that were not as happy and easy as that day was. There is grief, because that young boy has lost so much. I actually can not look at the photo too long. When I study that perfect face and those bright eyes, I think of what I wanted for him, and what I would promise him in my head before he went to sleep. I would promise that I would fix him, that I would fix Duchenne. When I go back to those nights, it is gut wrenching.
As a mother, a caretaker, and a person with embedded Irish Catholic guilt my default mode is to think of what I could have done differently. I wish it was not my default! I am working hard to shift it, but it is the stop my brain goes to first still. If I let myself live in that mode I am certain I would be in bed under the covers all day every day. That, or walking around with Craig in one of those dog strollers. I have shared with friends that if they see the dog stroller situation, it is time to call in some serious help!
It is often JB who helps me get off my default mode of negativity and second guessing. Which for people who know JB, may be surprising . Most would not describe him as optimistic or even upbeat. But, his ability to laugh when things are hard and meet the day without fear is enough to encourage me to do the same.
A couple weeks ago JB had a combined clinical trial and clinic visit. He had recently had the stomach bug and when they did his bloodwork his potassium was very low. After trying to get it up with food and fluids it would not budge. So after a full day of appointments JB landed in the ER. We were both not pleased to be there. I was getting teary. Not because I was worried about him, I just was tired and wanted to go home. The finish line for the day kept getting farther away and it was disappointing. JB was also not pleased and discussed with me what the odds of escaping the hospital were. We landed on the odds are not very good, so he may as well stay.
We were in the room at the ER, which in Worcester was a pretty interesting place. The nurse was wonderful, everyone was really nice, but one comment from the doctor had JB and I in a different type of tears, laughter. The resident walks in and is asking if JB has any other symptoms besides what the bloodwork is showing. His first question…”Do you have any muscle weakness”? It’s a good thing JB was strapped into a wheelchair because he would have fallen off his chair laughing. I think the doctor wanted to get psych referrals for both of us, but JB’s laughter is what got us back on track to get through.
Most freshman in high school are scared on their first day. There is a new building, seniors who are all the size of grown ups, not knowing what the right thing to wear, not knowing where your classes are, insecurity about a zit on your face, and wondering if you will have friends in your classes. For JB and others who are in wheelchairs there are added stressors about new aides, where to go to the bathroom, who will help me with the bathroom, will the elevator work, is there the right space for me in the classroom and will I runover kids in the hall. JB would have every right to be terrified for the first day of high school. Hell, I was terrified for him. But, he was ready and even excited. Barely out of the car he was greeted by the high school mascot, the raider, and got this photo taken. He wasn’t embarrassed or afraid, just excited!
And that is just impressive! Meeting his first day of high school with a smile and without fear is enough to get this mom out of her negative mindset.
JB is becoming the leader of his life. His openness to try things he is interested in and his assuredness about life decisions is admirable. He is hoping to help with the local cable network covering athletic events, he wants to try out for an acapella group, he is looking forward to the musical in the winter and he coordinated his own birthday get together. He made the challenging decision to withdraw from the clinical trial he has been doing for a year. When talking about it he said he doesn’t like missing school, he doesn’t like the infusions every other week, but he also really doesn’t like having Duchenne. It was so well said. He ultimately decided to focus on being a high school freshman and be as much of a typical one as possible. The trial was not a possible cure but a treatment. He felt that what medications he was taking now was enough and I respect that decision completely.
I figure if I ever start to dwell on what could have been done differently or feel overwhelmed with the amount of time and care JB needs I can look back at this blog post. With the list of his favorite things and the goofy smile with the mascot I know he is happy. When I asked him to make the list he answered easily and quickly. He actually had 20 items so we had to cut some. Although the promises I whispered in his ear have not come true, he has guided me to see that those promises weren’t the right ones to make. There is no need to promise to fix duchenne when you can have a hell of a life with duchenne. You just need the right attitude. And (most days) JB has that attitude for both of us!
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!
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.
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.
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.
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.
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.
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.
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.
Why is it so hard?
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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!
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.
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.
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.
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.
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.
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:
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?
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).
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!
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!
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.
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!
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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.
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.
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.
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!
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.