cheerleading vs. the slow burn

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.

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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.

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

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

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JB enjoying soccer with his friends recently.