I am always in the field looking for more information to help me navigate the Duchenne trajectory and I try to be one step ahead of how it is affecting my son, so I recently watched a webinar from Dr. Rob Benjamin, a Pediatric Endocrinologist at Duke University who described what puberty is like for a non-Duchenne male vs what is expected for a Duchenne affected male.

He stated that the FIRST and most important sign of puberty starting is testicular enlargement. He gave this diagram below about the size of the testicles in comparison to age.

He stated that typically around age 14 Duchenne boys will be checked for levels of LH, FSH, and testosterone. Typically with Duchenne boys, the levels for these will be decreased (due to steroid use which leads to delayed puberty). A bone age scan will also be done, which is just an xray of the hand.

The question remains when to begin testosterone supplementation.

He stated that if at age 14 there are no signs of puberty, the next thing to do is to try to “jump-start” the brain by giving 3 months of low dose testosterone and then to reassess in 6 months.

After it is established that testosterone supplementation is needed, a gel or injection is most likely to be prescribed. The benefit is approx. 14 cm in growth as well as increasing levels of hormone.

In regards to the gel, typically a glove is used as to not have it be absorbed by the person applying it. If the shot is given, then that can produce acne and also lead to an pain or issues of infection due to injection.

If you would like to watch the webinar or learn more, below is the link to the video!

WATCH: Puberty and Duchenne – Webinar Recording with Dr. Robert Benjamin, Pediatric Endocrinologist

Every year Parent Project Muscular Dystrophy does a Conference all about Duchenne Muscular Dystrophy. I was not able to attend this year and was very bummed about that. I kept hearing great things and I was able to sit down and finally watch Chris Jones’s Keynote Address given at PPMD this year.

What an incredibly honest, raw, and informative speech it was. I have followed the Jones’ family since Jackson was diagnosed. I have always enjoyed watching his honest, sincere way of educating all while showing what life is truly like with Duchenne. His son Mitchell was absolutely remarkable.  When I heard of Mitchell’s passing, I was completely torn up with emotion and heartbreak for this family.  I was filled with the knowledge and fear that this disease will too take my son. I have continued to follow along the Jones’ journey and am so incredibly proud of them for continuing to be a part of this community and for all their insight into this world of Muscular Dystrophy.

Below is a link to view the Keynote Address. It is 41 minutes long and it is completely worth every minute of it.

Chris has such a profound way of addressing the emotional layers that encompass Duchenne and helping others understand the journey.

I wanted to discuss some of the key points that were made in the video that really hit home with me.

I loved that it was called The Pursuit of Happiness: Surprising discoveries about finding joy in the journey.

I very often like the sentiment about life not going according to plan, so when Chris began the speech by saying that

The majority of life can be described in one sentence…”IT DOESN’T OFTEN GO AS PLANNED, AND THAT’S OKAY.” How very true that is!

Chris retold a story about how as DMD parents we often live in a world of isolation because in the early years people look at your son and slap you on the back with a “Wow, he looks great!” with often no idea that this disease is already doing internal damage that is beyond what the eye can see.  He called it a nieve optimism.

The rest of the talk, he went on to discuss 4 things we can do to contribute to the pursuit of happiness. Those things are:

• Gratitude vs Comparison
• Moments vs Things
• Relationships vs Isolation
• Meaning + Purpose vs Circumstance

I will go briefly into each one and touch on a couple things that he discussed that I found truly helpful.

1.Gratitude turns what we have into enough. It is not only the greatest of virtues, but the parent of all others. – Cicero

He recounts that practicing gratitude while the sun was shining because it conditioned me when things got really hard to just be grateful. On the flip side, comparison takes gratitude away. Comparison is an illusion that robs us of joy.

“Our souls were meant to withstand even the darkest of days.”

2. Moments- these are the things we often think of as being the great/grandiose experiences that bring us joy, but it’s actually the ordinary of life that can bring the most magical of moments.  Chris talks about little moments that exist in the ‘in-betweens’, because the very best moments you will ever have in your life are the in-betweens. 95% of life is mundane/ordinary. On the flip side, it is not Things that we need to collect to be happy, it is moments.

3. Relationships– our quality of relationships matter because loneliness is toxic and if we isolate ourselves it will only further us from joy.

4. Meaning + Purpose- “Seek for meaning + purpose first and happiness will follow”.

I found this message to be so incredibly beneficial and needed. What a great storyteller/leader Chris Jones is and I am so incredibly thankful to have been able to watch this address.  I highly encourage you to take the time to view this video!

When Jackson was first diagnosed with Autism at age 2 1/2 I began to worry about many different things…

*would there be treatments

*how would this affect his future

*will my son be  “normal”

*I fear the day that he is picked on by other children because he is “different”

When you are the parent of a Special Needs child, you have all your typical parenting fears and worries, and then on top of that you have added ones that other parents may never worry about. After Jackson’s Autism diagnosis, came the Duchenne Muscular Dystrophy diagnosis. With that, all of my worries, fears, and concerns came hurling at me like a tsunami.

It has been years since that day of diagnosis and those fears, concerns, and worries have only grown. This past week they all came to a head when I signed Jackson and his younger brother up for a tennis summer camp. Why? Because every child deserves to have the opportunity to do things that interest them. Jackson asked me if he could sign up and I will always support his interests. It was a double win when his little brother wanted to do it as well! So off we went to tennis on a beautiful sunny 75º  morning.

We arrived and instantly that mom guilt hit me, “I forgot the tennis rackets in the garage”. In all the hustle and bustle of the morning, medicine, eating, etc I completely forgot to grab them. I threw a quick prayer up that the coaches would have some extras. The boys were a bit nervous and apprehensive for a new sport, but I quickly found a bag of rackets, let them pick one out and off they went to practice.

I went over to my car and began watching the interactions between my boys and the other children.  All seemed fine.  A few minutes later I noticed that they were doing drills where they held the racket horizontally and balanced the ball on it all while maneuvering through multiple cones on the ground. I looked up to see my son struggling with the task. While most kids could whiz through it, Jackson was on his 4th attempt and the ball just kept dropping.

He pushed forward though and did not quit.

I began sorting through emails while they divided up the kids into teams to all get in line to hit the ball.  My sons were divided up on either side of the court. Then my gaze turned to the far right where Jackson was. His body language seemed a little off. He looked uncomfortable. As I watched closely I could see him put his head down. “Odd” I thought. Then I saw a group of boys talking to him. Then one boy in particular continuously saying something to him. I watched Jackson’s mannerisms and then saw him turn around, put his head down, and not face the boy. It was then that my mama heart realized something was not right.

Jackson looked as if he was about to cry. That’s not like my child. So I waited a second longer and then when I saw Jackson’s facial expression from him barely lifting his head up for a nanosecond, I raced over. I signaled to him to come off the court. He ran over to me and was visibly upset and crying. It took a minute to even get him to be able to talk about what just happened. And then it came….the words that ever parent of a Special Needs child dreads….one that they know will eventually happen….but pray with all their might that today will not be that day.

Today WAS that day.

Jackson looked up at me, with his big beautiful brown eyes and said

“They were making fun of me.

They were calling me names, laughing, and pointing at me.”

Of course all of my mama adrenaline kicked in and I desperately wanted to know WHO and WHAT DID THEY SAY and LEMME AT EM’! But my heart knew that kids can and will do these things when they perceive someone who is “weaker”. And for all the anti-bullying campaigns in our town, there is no way that bullying will ever end. There will always be someone out there who is hurt and thinks that they best thing to do is to hurt others and put them down because of their own pain and insecurities.

So what did I do?

I took him aside and told him how sorry i was that that happened. I explained that he shouldn’t ever let someone make him feel less than. That he is amazing, smart, strong, capable, and loved. I wiped his tears and told him that we could leave if he wanted to. He lowered his head and said yes, he wanted to go. I went over and talked to my other son and asked if he wanted to stay or go. I let him know that either would be fine. He said that he did not want to stay and that he wanted to go check on his brother. On the drive home I overheard little brother say “I’m sorry i wasn’t closer to you Jackson, I didn’t hear that kid from so far away. I wish I would’ve and I would’ve told them not to talk to you that way”. Did that make my heart smile…yeah. Because brothers get on each others nerves and fight and whatnot, but at the end of the day, we are family and we have each others backs.

So why does this whole situation bother me SO much?

Why not just let it roll off my back and say KIDS WILL BE KIDS or BOYS WILL BE BOYS?

Because it is NOT okay!

Boys need to have strong and kind role models. To learn that being cool does not come from putting others down. That just because you hurt, doesn’t mean that it is EVER okay to hurt another.

As a mom of a child with 2 disabilities, this is what I want others to know.

We all want the very best for our children. The moment that we hear that our life is turned upside down due to a genetic condition, physical disability, cancer, whatever…we  are scared. We don’t know the right thing to say or do. But each day we learn and we grow. We gain strength. But we all know that some day something like this will happen. And all we want is for our children to live as normal of a life as they possibly can. To be able to fit into society and not feel like such an odd duck. We hope that we have filled their self-esteem buckets so high that the rest of the world cannot poke enough holes in it to make it dry. 

That day I worried that the comments made by this careless child made a mark on my son. So we went home and discussed it a little bit longer. and then I told my boys the quote by Michelle Obama, “When they go low, we go high”.

So we decided to rewrite the script for the day. And we went out to breakfast, because fried chicken from Chick-fil-A always makes life better, right? And then we cancelled our day plans and booked a hotel and went swimming in the summer heat because you only live once…

BUT if you do it right….once is enough.