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.