jb at eleven

BC vs. Holy Cross

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.  

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Some post mad-libs tough guy face

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)! 

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​Second, from a brutally honest mom perspective...

Duchenne at eleven is:

• sad, depressing, lonely, hard and at times unbearable
• three major falls in less than two months resulting in ambulances, stitches, three broken teeth and two broken legs
• trying to figure out how the hell you give a kid much needed freedom, while always keeping him safe
• hearing so called professionals in their field say completely inappropriate and ignorant things in front of your child (I question why certain people go into pediatrics when they know nothing about children)
• long, I mean four month long, fights with insurance companies over the equipment you ordered to get ahead of the game and then realize you needed it yesterday
• desperate SOS messages to your Duchenne family looking for scooters or a PWC 
• fielding questions about what the future will hold from your son and all you think about is wheelchairs, breathing issues and cardiac problems
• weekly trips to a psychologist an hour away 
• home stretching, cough assist, stander protocol and leg splints
• not sleeping through the night because readjusting is needed
• hearing that he wants a regular adjustable bed and not a hospital bed because he doesn't want his room to remind him of a hospital
• watching videos from a year ago when he was walking perfectly fine and trying to not cry
• physical work, carrying a slippery 90 pound kid from a shower, because he doesn't want to walk on the tile and fall
• thinking you have found a place to hike for the whole family, driving a half hour to find it is not accessible
• leaving your child outside certain stores because there is no ramp
• sitting in interminable IEP (Individualized Education Program)  meetings
• desperately trying to control everything else, because life is out of control (this isn't actually working out for me) ​

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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:

• the sense of humor we have developed, although twisted, is quite fun. If you have never made fun of a new resident attempting to put a cast on at midnight, you are missing out
• through all those major falls, JB was more resilient than I knew he could be - three root canals were like a walk in the park...wait that would be hard for JB...you know what I mean
• we have figured out a bit of the freedom part, he takes his scooter all over the neighborhood but takes a phone and calls if there is a problem - we need to establish a problem is not asking what is for dinner for the millionth time, but it is a work in progress
• for the one or two ignorant professionals we run into, there are a dozen more who are smart, kind, helpful and just amazing - nothing like a PT to prove an Orthopedic surgeon wrong about getting a kid's ankles back to 90 degrees
• the insurance fight is just about over and I had the support of an amazing organization to help me through it, thank you Little Hercules Foundation & Amy Aikins
• we have a Duchenne family to answer our SOS calls, thank you to Sheryl and all of the others
• the discussion about the future, although talking about medical issues, is also about where he wants to go to college and what he will do for work, managing his hopes of what college he will end up at is a different story
• the hour long trip to the psychologist is more than worth every minute, if we keep his anxiety at bay, his mental health is our main priority
• the treatments we do at home are helping after the falls, he is walking a few steps and feels better
• the not sleeping through the night...can't come up with a positive on that one....i'll get back to you
• there are some really nice adjustable beds out there and he will have the nicest bed in the house
• watching the videos....another one I can't come up with a positive spin on
• the physical work is good for me and I am grateful to be in good enough health to do it
• hiking fail turned into a trip to the kids favorite chick-fil-A, and an always amusing trip to Dick's sporting goods, the jokes are almost too easy
• although he looks like a poor homeless child waiting outside stores, he has actually picked up some sweet snacks from people passing by (not strangers, relax, it was people we knew) 

• the interminable IEP meetings are filled with educators who are experienced and have JB's best interest in mind, so thankful to be where we are 
• as for trying to control everything.....i am pretty sure almost everyone is in the same boat....and we are all just trying to live in the "right now"

JB at the Ed Sheeran concert. He is living in the "right now", taking family and friends along with him, laughing all the way.