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.