He Knows.....How I told my son that Duchenne is a fatal condition

Just your not so average Thursday afternoon for a dude with Duchenne and his momma. A conversation that needed to happen, but this momma had been struggling to find the right time to have it.  Dreading revealing a secret that I have been keeping from Jake, but also hiding it was just as dreadful. Sometimes the Universe does not give you a choice and presents you with a golden ticket in the form of an opportune moment. Do you take it? Do you crumple it up and toss it into oblivion you like have so many times before because your just to damn chicken to go there? Yesterday, I had that golden ticket dangling in front of my face yet again. This time I snatched that mother fucker and ran with it.

Jake had a pulmonary check up. For those of you that aren't in the know, that means a visit to the lung doctor, to check on Jake’s breathing to see if needs any assistive devices to help him breathe. 

As we pulled into the parking lot with the Bath Bus, the only van accessible spot was taken by another ‘bus’. We carried on to another spot and finagled Jake out of the van and devised a plan to get him back into the van after the appointment. We walked into the waiting room, which is full of seats. They don’t leave much room for power chairs. I got Jake settled into a spot out of the way. I go up to the counter to sign Jake in. There was a man, in a power chair sitting next to the check in counter. He was not doing much for himself....including breathing. The man had a machine strapped to the back of his power wheelchair, it was breathing for him. The click, whizz, click, whizz sound of the man “breathing” was melodic and every one in the room was avoiding looking at him, including me.

We didn’t wait long to go back to the room. All of Jake’s preliminary tests came back great. No day time machine. Yet. The Doctor made a referral for Jake to do a sleep study. Jake has the exciting privilege of being strapped up to a diagnostic machine while he has a sleepover at a clinic. They will monitor his oxygen saturation and lung function as he sleeps. If his lungs and diaphragm do not perform well, he will need a machine to help him breathe when he is sleeping. 

We head out to the appointment desk, and I hear click, whizz, click whizz. The man with the breathing machine is headed back to the waiting room. His father is at the appointment desk. He looks like he is in his late 60’s early 70’s. He is chatting up the nurse for an uncomfortably long time, like most people from that generation do. I didn’t hear what he was saying as I was making our appointment. The dad was standing in front of the door blocking the exit. He ended his conversation with the nurse, much to her joy, to let us out the door. I jokingly asked if he was the one who took ‘our’ parking spot, he said yes, with a half sort of smile, unsure if I was being serious. I patted him on the shoulder and let him know I was kidding, he then smiled and we carried on out the door. 

I had to park in a regular parking spot. That means Jake has to wait at the curb for me to pull around to deploy the lift and pick him up. Just as I was deploying the lift, Click Whizz and his mom and dad walked out of the doctor’s office. The dad came up to me oooooing and ahhh-ing at our fabulous Sprinter and asking me about gas mileage and suspension and other ‘Man’ curiosities. Travis would have been proud that I was able to represent our van and all of its awesomeness with such conviction! I started to tye Jake in and then the dad started telling me about his van. I was only half listening because I was otherwise engaged trying to bend over in a lady like manner, while protecting my pained back as not to give him an eye full as I was tying Jake’s chair down. I vaguely remember him rattling off model numbers of this and that and why they got the van they did back in 1990. They had to get the big van, because they needed to transport 2 wheel chairs. I let him know that I have another son, who also has Duchenne so we needed the big van too. ::::Golden ticket moment:::: “Duchenne he says?” I say yep, he says “OH! Us too! we HAD two sons, Click Whizz had a younger brother who DIED at 30, and Click Whizz is 40! Can you believe he has made it to that age?”

SHITSHITSHITSHIT.....mykiddoesntknowDUCHENNEwillkillhim....IS ALL I CAN HEAR IN MY HEAD....I don’t know what he said after that but we said a sort of good bye to each other and he started to walk to his van. Then he hollered to me “Hey! Are you connected with a parent group?” At that moment I saw this man in a completely different light. While he was giving me a heads up on how I'm going to need to put velcro in all of Jake’s pants and giving me his phone number, for me to call him if I ever need any advice because he has been where we are...I saw the wrinkles, I imagined all the friends who dropped off the face of the planet  long ago, I imagined the family that just couldn't handle it anymore and I saw that Duchenne Is.His.Life. They have been at this for 40 plus years. I saw me.I saw Travis...30 years into the future. I almost broke down. It made me sad and tired all at the same time. He asked what my name was, “Danielle” I said, and gestured over the Jake and said “ and this would be Jake” Apparently the dad thought I said BJ and said “See ya later BJ”  I graciously took his phone number thanked him, and wished him well. 

I shut the side door on the Bath Bus, and as I made the long walk back around to the drivers side...I riffled through my purse...found my balls and hopped into the van. Jake and I are now alone in the massive box of a van, but I felt like I was on stage in front of a full house at the Royal Opera House in London about to belt out my rendition Figaro, with Bugs Bunny as my conductor. 

 I cleared my throat, took a deep breath and turned to Jake and said, “okay, I need to have a talk with you” Jake with a bright red face and a nervous smile said, “oookkayy”

Me: “ Did you hear what that man said?”

Jake: “ Yah, about the velcro”

Me laughing: “noooo”

Jake: “Okay then what do you mean?”

Me: “ What he said about his other son”

Jake: “Oh that......”

Me: “ Now before I go any further, I want you to know that there are no guarantees in life, including life it self. We could pull this van out onto the street and we could get hit and we could both die instantly. No body knows how long they will live. That being said, Duchenne is considered life threatening. Some people call it fatal, some call it terminal. But Duchenne is attacking your muscles, even the ones that keep you alive. Did you already kind of know that?’

Jake: “ Yah kinda”

Me: “ Well I feel like I have been keeping this secret from you, and I thought now was just as good a time as any. If you look Duchenne up on Wikipedia it says boys with Duchenne don’t live past the age of 27. But that man (Click Whizz) is 40, so you just never know.  Does it scare you?”

Jake: “ yah a little”

Me: “Let me tell you something about life. Even if we could all live to be 100 years old, life is still too short. It goes by too quickly. No matter how long of a life you have, its how much you put into it thats important. You have to tell daddy and I your dreams, and all the things that you want to do in life so we can make it happen. No dream is too big. Daddy and I love you so very much and will do anything for you. We will always be here to help you with what ever you need.”

Jake: “Okay”

Me: “Okay, Any questions?”

Jake: Predictably....”no”

Me: ” Okay if you ever have questions about it, or get worried about it PLEASE talk to me”

He said “okay” and then I said “are you ready to go home BJ?” Then Jake and I both belly laughed and headed home”

SIGH! I did it! I did it! I MAMA-ed up and told him. I don’t think there is ever a magic time to tell your kid his disease is going to kill him. I'm not sure if I did it right, I just did what felt right. So now he knows and he handled it pretty well. He is 13, and is close to being part of his health care and life decisions, and he needed to know the whole story. I am sharing this story to give some power to my tell/don’t tell fellow Duchenne Parents and to share that Jake is my hero. He is a tough kid and an all around Bad Ass. I can see the man he will one day be, even through the haze of teenager angst. I see lots of kids his age, and my heart breaks every time I see a boy running and goofing around, because Jake can’t. Jake is soo much more than that. He is going to do great things despite Duchenne trying to stand in his way. His Bucket List has been started..Item # 1.... FRANCE! We are on it Jake...XOXOXOXO

So yah, He knows.

For Reference :)


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Comment by Kara on June 30, 2015 at 12:40am

Thanks for the comment and "bump" on this post, Bird. Otherwise I might have missed it among all the others. What a simultaneously encourgaing and heartbreaking situation and post. Thank you for sharing, Danielle! 

Comment by Brid Murray on June 11, 2015 at 10:59am

Reading this two years on and crying a little....such bravery..... 

Comment by Danielle Bath on May 17, 2013 at 3:21pm

Jake is 13 Jen. 

Comment by Jen Portnoy on May 17, 2013 at 1:13pm

May I ask, how old is Jake?

Comment by Andrea Cleary on May 2, 2013 at 11:23am

Oh those ''SHITSHITSHITSHIT'' moments that force us to "Mama up''. But you are right, there is something extra-ordinary about our fellas, a strength of spirit which outshines physical abilities.

Good on you, Danielle! And Bon Voyage en France!


Comment by Christopher M. Jones on April 30, 2013 at 7:50pm

What a beautiful young man.  I'm so sorry but am glad to hear he took it in stride.

God bless you and your family.

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