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To Unbalanced Days Ahead

12/28/2020

JB and Caroline with the "real Santa" on December 19th, 2008

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.

That Christmas morning

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.

JB at that time

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.

JB gearing up for skiing

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!

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Cheerleading vs. The Slow Burn

10/21/2020

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When JB was struggling with his mental health three years ago, I spent time with his therapist learning what JB needed to hear from me to process his diagnosis better. I learned that I had only been talking about all the good things that were happening to JB as a result of his diagnosis. I was solely focused on the adaptive sports, make-a-wish trips and meeting famous athletes.

In my attempt to keep everyone positive, as well as protecting myself, I had become like a cheerleader cheering for a team that was going to lose no matter what. Sure it is nice they are still there cheering, but the team is saying to themselves when is that cheerleader going to shut up and realize there is nothing they can do to change the outcome of this terrible game. JB needed for me to stop telling him how great his life is because of Duchenne and allow us space as a family to admit that there is SO much that goes along with this diagnosis that is not good. All the adaptive sports, make-a-wish trips and meeting famous athletes can not erase the monumental struggles JB faces.

That intro is a warning to you that this is not an uplifting post. There is not much cheerleader attitude in this one!

I consider myself to be good in emergencies. I don’t panic at all. I often am the opposite of panic. I go into a bizarrely calm state. I can disconnect from the situation. I make decisions quickly and decisively. I do this while making light of the situation with the person who is in crisis and connecting with others around. I might chat up an ambulance driver or try to make a joke with an ER doctor. Needless to say, I think I am a pretty good candidate for anyone’s crisis squad.

Over the course of the years there have been a fair amount of crisis situations with JB. From falls, to mental health breakdowns and emergency appendectomies . All of those I have handled with that calm. I also can not underestimate the strong support that my family is in these crises!

But what I want to talk about is the impact of adrenaline and other hormones that are released during these situations. For some it makes them hyper and out of control but for others, like me, it gives me the power to deal with anything in front of me with quiet strength. It works to help me maneuver the crises while not allowing JB to get too anxious.

The “problem” so to speak with Duchenne is that it is not always a crisis situation. It is what I think of as a slow burn. This slow burn offers no adrenaline.

The slow burn is the loss of muscle function over time, the stress of remodeling your house and the angst of getting new equipment. It is the daily grind of lifting, stretching, bathing, toileting and managing your child with Duchenne. It is the juggling of doctors appointments, sleep studies, prescription refills, IEPs, maintenance on wheelchairs and more!

I would like to reiterate that the slow burn offers no adrenaline...at all!

There is nothing triggered in your body that helps you somehow rise above. There is often nothing to “fix”, nothing to “decide”, no “action” to take. It is just a quiet smoldering fire that sucks the energy out of you.

I mostly feel like I have control over the burn. I manage to throw some water at things that need it to keep it at bay. Not all days are perfect. There are certainly days that everything that should be done for JB isn’t. But, those days are usually ones where he has been enjoying life too much to have the time to stretch, use the stander, or cough assist so I let it go.

A few weeks ago the burn was not under control! That is the thing about the slow burn, you can forget how hot and dangerous it can be. You are not aware that a new piece of information adds to the burn in a way that can put you over the edge. One phone conversation with a doctor about a new piece of equipment needed can leave you thinking about the cold, hard, unchanging facts about Duchenne that you can not cheerlead away. It can leave you crying those ugly, dry-heaving cries behind closed doors because your kids are home again due to one of the many Monday Fall Holidays .

As part of JB’s full Duchenne visit in late summer he had a sleep study the first week of September. During the study it was clear that JB barely slept at all. He was up, as he often is these days, a few times asking to be repositioned. He was snoring frequently as well. I chalked this up to this is just how he sleeps now, no big deal.

When I received a call from the pulmonologist to get the sleep study results, I was met with the fact behind why JB has been sleeping so poorly. His lungs just are not working as well as they were before. It explains him waking up, his fatigue during the day and even the morning headaches that have been happening more frequently.

I immediately go back to the day JB was diagnosed with DMD. The three things I remember about what the progression of the disease the doctor outlined was:
1)Around 10-12 he will lose the ability to walk
2) In his teen years his smooth muscles, his lungs and heart will be affected
3) He will succumb to these complications in his early twenties

And here it is, playing all out as they said. In that moment I could not think about how much therapy and medicine has progressed since JB’s diagnosis. I could not remember any of the good things that I used to say as the cheerleader. I just heard those 3 daunting facts I was told over a decade ago on repeat in my head.

So that day the slow burn gets out of control. There is no adrenaline to help you find water to throw at it. It just burns away. And the day is hard. The few days after that are just as hard.

Then you settle. You get more information from your Duchenne support team. That support includes doctors, nurses and DMD parents. You learn that the intervention JB needs, a BiPAP, is something that could be the only intervention he needs for over a decade. The days get easier again. You manage to start finding the strength in yourself to water down some of the slow burn again. The BiPAP he needs and why he needs it is added to the fire but you can keep it under control.

You get JB very reluctantly back to the sleep study lab. (Thank goodness he had a buddy doing a sleep study that night, it helped so much!) You have the same sleep study tech you had 4 weeks prior. It is ok. He puts the mask on and immediately starts taking deep easy breaths. He loves it. He is laughing because he is so comfortable. He doesn’t wake up during the night to get adjusted. I hear no snoring. As we are leaving in the morning he says “Mom, I feel like a million bucks!”

The slow burn is grueling. But, knowing that there are somewhat simple interventions that can make a positive difference is what you need to focus on to keep going.

JB smiling through his anxiety in December 2017. The red around his mouth is from licking and chewing on his clothes.

JB in the summer of 2018. There had been a major fall that broke three front teeth and two separate leg fractures in less than two months.

How it feels to be a special needs parent handling the slow burn.

JB last week, October 2020, showing of this teeth fixed after over two years of issues after a fall in 2018

JB enjoying soccer with his friends recently.

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jb is a teenager

9/15/2020

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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

To Unbalanced Days Ahead

Cheerleading vs. The Slow Burn

jb is a teenager

jb at eleven

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