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!
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.