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!
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.