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jb is a teenager

9/15/2020

I am back to promising myself that I will share more regular updates about what is going on with JB and his journey with Duchenne, again. The excuse I will go with is that I have not had any time without children in six months. That excuse is not a very good one though since the amount of time Netflix has entertained me would show I probably had some free time on my hands!

Since it has been a while, this will be a long one.

The last six months, pretty crazy times! They have wreaked havoc on our lives, our schedules and our emotions.

The early days, kind of fun right? Kids home from school during the month of March which always feels interminable was nice. There was lots of baking, board games, family movie nights, zoom cocktail hours and exchanging of funny memes. The St Patrick’s Day online concert with the Dropkick Murphys, great. Watching Easter week services on the TV in sweats, not too bad. I was thinking we would get this wrapped up in a few weeks, for sure be back at school after April vacation. I believed a forced few weeks of home time is just what we all needed. We needed a break from driving around like crazy people to sports, theater, physical therapy, dentists, and doctors. I agreed that this was good for the kids to have some unstructured time. It was like life was back before all the technology. They were just playing outside and going on walks.

But, as the weeks stretched into months the days were harder. We were told JB was at high risk and thus we continued to operate with the utmost caution. That caution took over. The fun faded into anxiety about germs, procuring food, wiping down every item that came into the house and fighting with JB that you do not need a hot lunch every day. There were less board games and family movie nights, and more nights with the 3 of us in our separate spaces binging different shows or playing xbox. There were less zoom cocktail hours with people you haven't spoken to in a decade, and more reading Elin Hilderbrand. The folder on my browser filled with all these online experiences at museums and music sat with links unclicked. There were less days of I will teach the kids real life skills about money and the world, and more just get the crap turned in you need to for school. Don’t get me wrong, there were still some good moments. The mystery produce pick up once a week got me cooking some different things. The first take out after a couple months, so good! The funny memes and online content kept coming.

By mid-June we had settled into a strange...wait for it....the most overused phrase of 2020…”new normal”. Another overused word that is getting on my last nerve is “pivot”. We were in such a routine it was hard for my mind to “pivot” to move to the cape for the summer. At home in Dover we see the same 10 people walk by a couple times a day with their dog, that’s it. At the Cape it was at first jarring to see so many people out and about enjoying life near Craigville Beach. Most with masks but it somehow felt almost reckless to be there. I was worried that the kids would have nothing to do.

But, as the weather turned warmer I realized that perhaps it wasn’t a routine we were in but rather a funk. We needed a change, and thanks to Grammy and Peely (what the kids call my dad) we found it at Cape Cod! We were fortunate enough to spend days socially distant on the beach and evenings sitting on the deck enjoying the river view. There were sun filled boat rides and trips to the drive-in to watch sports. There were care packages from Camp Jabberwocky. The kids found some things to do. Caroline worked for a couple hours a day at the nearby tennis courts. In July, Spaulding Adaptive Sports offered adaptive lawn games and hiking in Brewster. JB absolutely loved it and it gave us a good excuse to explore other parts of the Cape. All in all it was a great summer. Time with family and friends (at a distance outside) was wonderful. To feel connected to the world again is just what we all needed.

We were able to get in all of JB’s doctors appointments at UMass in August. We figured that in case covid got worse again, it was best to get everything in. As always, it was a long two days but we are so grateful to have such an amazing team so close to us. JB was a rockstar. We always manage to have some laughs even in stressful situations.

This next little story shows our somewhat twisted humor, but it works for us.

A middle aged man checking in was being asked the screening questions for covid:
Receptionist “Have you had a covid test?”
Patient: “A what test?”
Receptionist “A covid 19 test for the coronavirus.”
Patient “I don't know what that is but I have had a lot of tests recently.”
Receptionist “Sir, I am talking about covid 19, the coronavirus, you know the GLOBAL PANDEMIC!”
Patient “I still don’t know.”

Now, when anyone says covid 19 or coronavirus we say “you know, the GLOBAL PANDEMIC”.

The best part of the visit was being able to connect in person with his team. It was nice to ask all the questions about the safety of returning to school. The 5 months since March had given them the time to see if DMD kids are more susceptible to covid 19 and what it looks like if they do get it. They were able to say to me and JB with confidence that if we take all the precautions the CDC is recommending he can go to school! We are still cautious but when he had to return to Worcester for a sleep study the following week, we ate outside at a restaurant for the first time. That felt really good!

Other takeaways from the appointments were overall he is doing well. His cardiac function is good. We need to add some stretches, which isn't great since we aren't going to PT because of covid, but manageable. For a DMD kid turning 13 he is in good shape!

There is a clinical trial that is coming to UMass that JB would qualify for. We are gathering all the information and JB will decide what he wants to do. Our past experiences with clinical trials have shown that he needs to be an active participant in the decision process. It is his body that is going through the tests and treatment and he needs to agree to what he is being asked.

We were driving in the car back from Worcester and I asked him what he was thinking about joining the trial. We talked about how much time there would be away from school and what tests were involved. He was mulling it over and then said “I’m not sure I want to do it”. I said “OK, it is a lot and I understand”. He says “No, it’s not that. It’s that I'm just not sure I want to walk again or lose any of the great activities I can do because I have DMD”. I couldn’t help but laugh. Perhaps I didn't explain exactly what the drug can do but it will not get him walking again. It could help with prevention of muscle scarring in his heart and other places. But, what an amazing outlook this kid has! He is truly happy with everything in his life. Even being in a power chair he likes his life the way it is. I am so pleased he can look at the world this way.

All in all this has felt like the endless summer with a full beach day on September 12th! As I write we are still awaiting the return to school. Our school district is doing a hybrid model starting today, September 15th. Caroline’s in person learning has been pushed back a week due to large gatherings over the weekend but JB will start in person! JB asked if he could stay home because it was his birthday. My answer was NO! I said you have not been in school in 6 months, we have spent every one of those days together you are going. If you have school you will be there. He is actually really excited to see some of his friends again after so long, even if they are in masks.

So that just about catches everyone up.

Now, the topic at hand, JB’s 13th birthday. I can not believe he will be a teenager. How did that happen!

Each birthday that comes provides the typical parent feelings of how did my little boy get so grown up and where did the time go yada yada. But when you have a child with DMD there are the added emotions of how many years have passed and how many years are left. What will those years look like? One can not dwell in that place very long though because if you do you are unable to give your child the birthday celebration(s) he deserves. As much as I want to just not make a big deal about his birthday he wants to make a big deal about it, so that is what we will do!

The night of his birthday we are hitting up another fine dining restaurant establishment that is serving in a parking lot. On Friday JB is having a few friends over for a socially distanced outdoor movie party. Then, on Saturday we are seeing our “DMD family” for an outdoor adventure. This week will be filled with first days of school during a pandemic, lots of friends, family, laughs, and maybe a few tears from me.

In closing I want to say that at this difficult time we must balance the safety of our communities while we try to enjoy ourselves. When you have a child with a complex medical condition this is more difficult than it is in a typical family. You need to keep them safe at all costs but also don't want to waste the time they have by staying inside all day, every day. I hope each one of us can keep the needs of others in mind before our own in the coming weeks and months. It would be a shame to miss out on the things that we could possibly enjoy because of some poor decisions by a few.

I am now putting it in my calendar to have a post every month. Now we need to see if I can stick to it!

JB doing one of his favorite things...boating

JB walking Craig all by himself in the spring

Tackling some remote learning

Enjoying his time on the beach

Nice views for dinners this summer

Lots of family beach time

Enjoying adaptive yard games with Spaulding

Watching the Bruins and Celtics at the drive-in

Care package from Camp Jaberwocky

Endless summer beach day on September 12th

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jb at eleven

9/11/2018

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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.

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)!

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)

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.

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thoughts from a mom

jb is a teenager

jb at eleven

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