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!
The lack of updates on JB isn't only laziness, it is just very hard for me to write. I know so many of you support us because of this cool young man, so here we go. I promise to do more regular updates!
I just can not fathom how much mobility JB has lost in less than 6 months. JB not being able to get out of his scooter to stand for high fives at the BC football game, was almost as hard for me as watching Holy Cross get killed last Saturday. I did make JB endure sitting with all Holy Cross fans, like his friend Ned in this picture, even though I felt bad for him.
The people we haven't seen in a while are shocked too and try not to say anything. There are lots of awkward moments when talking to someone, about when can JB come over, and I have to say "well, he can't really walk anymore or go to the bath room by himself". He went from using a scooter for long distances, to our house filled with equipment to just get him around. I am hoping, when we finally get his custom PWC (new abbreviation I learned this week for power wheel chair), we can return some items to the kind people who lent them to us. The world seems to just shrink as you need to consider accessibility for everything. What family can we go visit, without bringing a million pound portable ramp with you?
I am told that this is one of the hardest stages of Duchenne. That the unsteady walking and constant falls are more nerve-racking than him being in a wheelchair all the time. Friends say when we get through it, it will be better for a long stretch. So, we hope that we get to that better stretch soon but that means no walking at all which doesn't seem better today, in JB's eyes for sure.
First, what I think is JB's perspective...
He honestly thinks that his life is pretty amazing. It is filled with friends. Friends are kids his own age, teenagers, toddlers, and adults. He has a way of connecting with most anyone he comes in contact with. It is his saving grace, as he becomes more and more dependent. He needs to be constantly reminded that not everyone has his sarcasm or his 5th grade boy humor. Luckily there are a lot of people out there who seem to appreciate it. Even when confined to the porch at his most favorite place in the world, the beach, he was surrounded by friends. The mad-libs they came up with can never be shared in public, but what he learned in magic tricks, new card games, and announcing skills are keepers.
He is more self aware than any other child I know. He recognizes his limitations and his strengths. He was telling me about his social studies group and the rules they made up. One was to respect each other. He said, "that is easy for me to do". I questioned him and he said, "well, just not to my family". He tries really hard every day to be a better brother, son and friend. I imagine it is hard, as he must be so frustrated with his body weakening and needing more help.
He can be very impatient about what is happening next. It could be because he knows that life is out there and you better get living it. We work on mindfulness and staying in the moment. One of his teachers told him "to stay in the right now". To that JB said, "well I want to be in the right next". He is living his life through theater, sailing, skiing, baseball, and now concerts (his first was Ed Sheeran on his actual birthday)!
He has such joyful places like the Cape, Loon and even boring home that are filled with the people who love and support him. All in all, he is a happy and funny 11 year old, who is grateful for those people who are striving to keep him that way, while not totally spoiling him (he would probably take more spoiling though)!
Second, from a brutally honest mom perspective...
Duchenne at eleven is:
Last, my attempt to stay in the "right now" or get excited about the "right next"...
I answer (almost) all the negative stuff above with a positive spin:
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.