Lately my Mama heart has been hurting. It has taken me a couple weeks to process it all and to gain my strength to discuss it. Jackson had his check up with his team at Nationwide Children’s Hospital. It was imperative that he have a cardiac MRI due to his age with Duchenne and to gain the best information as to how to treat him. After a very long day and many attempts we were not able to get the test completed and Jackson and I left in tears. Tears because just getting the IV in is typically a huge challenge. It went flawlessly and just went I took a breath, the staff was telling me that the test needed to be stopped due to Jackson’s inability to remain still and to come back in a year to try again. 

My heart just broke, my tears flew down, and my anger built up. My mind screamed  “I am tired of hearing maybe next year….what if he doesn’t have a year”. After much discussion, frustration, and tears we left. 

The next day went a little smoother with positive results from PT and pulmonary. Jackson’s doctor was pleased with his muscle strength and continuing ability to walk. More tests were done and it became blaringly apparent to me just how much Jackson is struggling right now to get around. How in the last few months he has changed and not for the better. It hurts my heart because this is the age that most children are transitioning to even more independence, and I am constantly reminded of all the things he cannot do or won’t be able to. That day the doctor told me that even though Jackson is stable, if he takes a fall and breaks a leg then he will not be able to recover and that he will lose his mobility and will be in a wheelchair. He told me to begin the process of getting him fitted for a power wheelchair. 

There is a moment when something is told to you….something that you have known will be told to you for YEARS, yet when you are face to face hearing the words being spoken to you….it is heart breaking. I am typically a very positive person, but when a transition of this nature is on the horizon, it is frightening. Frightening because lots of conversations need to be had, modifications need to begin, and emotions are running high with worry over how he and his brother will handle it all. 

It has been a challenging few weeks for our family with worry, concern, fear, and trepidation entering into this new chapter. I pray daily that Jackson will continue to have his strength and to keep walking, but I also understand the progression and nature of this DMD beast and unfortunately I do not think this is a battle we will win. For now, we will take it one day at a time and love each other tremendously through the process. 

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.

Each year I like to go into the local schools and do a presentation about Jackson and allow the students to meet him, to research and learn about Duchenne Muscular Dystrophy and to put a face to the disease.

This year we had a little bit more than 32 questions that local 7th graders wanted to know about DMD and about Jackson. They are wonderful questions and I feel like instead of only answering a few the day of the presentation, I figured I would answer them here in case they wanted to see how I answered all of the rest that we didn’t get time to cover.

DMD Questions

1.How do you know he had Duchenne Muscular Dystrophy?

Jackson was diagnosed with high functioning mild autism at 2 1/2 years old. I was taking him to see a doctor regarding that and she decided to run some bloodwork before we began some supplements and vitamins. While doing that some of his lab levels came back elevated. Like WAY more than should be. One specifically was a test called CPK. It stands for Creatine Phosphokinase and the normal level is less than 200. Jackson’s level was at 31,804.  He also had elevated liver enzymes. When the CPK level is that high, it typically means that there is muscle breakdown happening somewhere in the body. So from that moment forward I knew something was going on with him. Then we went to see a doctor called a neurologist who told us to get some more blood work done and with that they can run genetic testing to look and see if you have anything underlying happening in the body. We had to wait 6 weeks to get the results of that test, which felt like 6 YEARS! When the results came back they were positive for Duchenne Muscular Dystrophy.

2. Why do you send him to school and not have him just stay home?

Jackson may have a chronic debilitating disease, but he still deserves a normal childhood. He still is just like every other kid and wants to run around, have fun, play games, and be silly with his friends. Socializing with others is an important aspect and something that some DMD boys struggle with. Jackson is by nature shy, so it helps him to have a few great friends at school that he can be a kid with. He still needs to get an education, learn all the typical things children do, and progress just like any other child.

3. What does he like to do in his free time? 

Jackson enjoys being outdoors in nature, exploring mostly. He also enjoys traveling and has been to many countries including Costa Rica, Dominican Republic, and the Bahamas. Statewide he has traveled to Kentucky, Tennessee, Florida, North Carolina, California, Illinois, and Michigan. Jackson is a HUGE animal lover! When he was younger he was very into dinosaurs, that has since progressed into birds, exotic/endangered animals, and the kiwi bird. Jackson enjoys reading animal encyclopedia’s in his free time and understanding where certain animals live around the world.

4. Is it normal with people with Duchenne Muscular Dystrophy to be flexible?

I am not sure if flexible is the word I would use, but boys with DMD typically do a lot of stretches to keep their muscles flexible so that they do not develop contractures.  A contracture is where the muscles or tendons harden that leads to rigidity and deformity. Jackson wears night splints to bed every evening to help stretch his muscles and to lessen the development of contractures.

5. What is Jackson’s favorite animal?

Jackson’s favorite animal is a toss up between his dog Rexy, who is a Pembroke Welsh Corgi and also the Kiwi Bird. 
6. How old was Jackson when he began to walk?

Jackson hit all his developmental milestones at the typical age children do. He began walking around 12-14 months. He was a great walker, was steady on his feet, and loved being able to get around. He did trip and fall around that time and hit a metal trash can causing him to slice the top of his nose. To this day he still has a scar across the top of it from that accident.

7. Are there a lot of medications to take?

With this disease, there really are not any “set medications” to take. It is not like a cancer diagnosis where there are treatments or protocols. With this disease there is no cure, so there are not medications you can take to get better. There is one thing that many of the DMD boys do take and that is steroids. They take them to increase their strength day to day and to be able to keep walking as long as they can. The steroids do have terrible side effects, so each family has to weight out the best option for their child. Jackson has been taking steroids since he was 5 years old. Jackson also takes vitamins and supplements that aid his body in being as strong as it can be.

8. What causes Duchenne Muscular Dystrophy?

DMD is a genetic disease, which means that it can be passed down from one generation in the family to another. If the individual has the defective gene, then there is a lack of a muscle protein called dystrophin. This protein keeps our muscles strong and intact. For example- when normal people go to exercise, they tear parts of their muscle and then the body rebuilds them back, even stronger. When a boy with DMD does gym class or something strenuous to the muscles, they tear but they lack the protein to re-build them back stronger. So over time the muscles continuously break down and they are unable to be strengthened. As the individual then ages, rapid degeneration of the muscles happen.

9. Is there a specific routine you follow because of DMD? 

There isn’t a specific routine per say because I still want Jackson to feel like a normal child, but there are things that our family does that is different than other families. For instance, every 4 months we travel to see his team of doctors and they perform lung function tests, heart tests, physical therapy, occupational therapy, and many physical ability tests to see if Jackson’s muscles are stable or declining. Jackson see’s many doctors across the state of Ohio and that has become his new normal.

We also do not engage in sports due to the concern of muscle breakdown. Jackson does do adaptive sport programs like basketball, football, and baseball for children with various special needs. So basically, we just try to find modifications with everything Jackson wants to do. I do typically always have a mobility aid with me (like a stroller or scooter) if Jackson’s tires out and needs to take a rest. He is able to get around very well, but long distances and stairs wear him out quickly.

10. What is your favorite thing to do?

Jackson’s favorite thing to do….well he said that he can’t think of just ONE favorite thing. So instead he listed a few. He loves to go swimming, cook/bake food, travel, and spend time with his puppy.

11. Does he enjoy school?

Jackson struggles at times with the amount of work he has to accomplish at school. His muscles and body tire out as the day progresses and that leads to inattention and trouble focusing at times. He does enjoy school, but as we all know, some days are better than others. Jackson’s favorite subjects are math and science.

12. What would Jackson like to do as he grows up?

Jackson wants to be a zookeeper when he grows up. He is such an avid animal lover and has been able to travel around the state to various zoo’s to meet zookeeper’s and some of his favorite animals. His heart is all about helping out animals.

13. How challenging is it to take care of Jackson?

I do not find it all at challenging to take care of Jackson because he is so mild mannered, calm, and sweet. What I find challenging is keeping up on the latest research, not always knowing what to do and what the best decision will be, and mainly how Jackson feels. I wish that somedays I could feel what it feels like to be him. To see if his muscles/legs hurt, to understand the challenges he faces each day, and to better know how to care for him specifically.

14. How do you cope with having someone suffer and there’s nothing you can do to help?

What a great question. This is a hard one. No one wants their child to struggle or suffer. When I was growing up I used to think about having a child and I used to think that no matter what- the one thing that I know I won’t be able to handle, is having to lose a child. Then Jackson came along and 4 years into his life I was faced with that exact knowledge. That all too soon I will have to part mortal ways with my child. And let me tell you, that is a HARD pill to swallow.

I have had conversations with friends who have lost their child and specifically one of my college roommates lost her daughter suddenly and her and I chat about the differences and how I feel like I would not be able to handle her situation and she feels like she would not be able to handle mine. They say that God only gives you what you can handle, well I don’t necessarily believe that. What I believe is that you have a decision to make about how you will handle the situation. After you make that decision, for me it was choosing to rise up. To know that everyone struggles, to go forward and do ANY and EVERY thing that i CAN DO about this disease. Research, advocate, anything. This is what I have been given in life, and though it is challenging, it is my life. I will make the very best of it. I will create an atmosphere of endless love for my children. We will make memories and laugh and cherish each other every single day, because I know that one day I won’t have those opportunities.

15. How often does Jackson visit the hospital?

We travel to see his team of doctors every 4 months. They monitor him and make sure there are no significant changes to his health.

16. Where do you go to see doctors/treatments?

The great news is that there are two leading DMD centers in the state of Ohio! So many families travel from all over the country to see their team. Luckily for us, we only have to travel a few hours. After much research and visiting Cincinnatti Children’s and Nationwide Children’s, we decided to go with Nationwide Children’s Hospital in Columbus, Ohio.

17. Why do you want to travel to New Zealand?

Jackson’s favorite bird is the Kiwi bird. It is native to New Zealand. Kiwi’s are flightless birds and ever since Jackson first learned about them, he has been drawn to them. We were able to find some at our local zoo and with the help of the staff, go in and feed and pet them. They are nocturnal so they are never visible at the zoo.

18. What are some of Jackson’s daily struggles?

Jackson does not have very many struggles. He fatigues easily when taking long walks or things that require much physical stamina. He does have a hard time now that he has been taking steroids for a few years because one of the side effects of steroids is growth progression, so he is beginning to notice that his peers in his class are taller than him, but other than that he says that he is not afraid of anything and that he doesn’t struggle.

19. Why do mostly males have the chance of getting DMD?

DMD is a genetic condition that is carried on the X chromosome. A female’s genetic makeup is XX and a male is XY. So a female can be a carrier which means they have the disease, but no symptoms will manifest. That is because they have 2 X’s, so because one X has a problem with it, the other X kicks into gear and takes over. With males, they only have the 1 X so if that one has issues with it, they do not have a back up one. That is why they have symptoms and manifest the disease. There are some girls with DMD though that have the same symptoms as males, though it is rare.

20. Is there are chance you can grow out of DMD?

There is no way you can grow out of DMD. You are born with it, it is part of your genetic makeup and you will always have it. The severity can be less, as in the case of Becker Muscular Dystrophy, but if you have DMD you will always have DMD.

21. What have you had to do to help Jackson so far?

In the beginning after diagnosis when he was 4, it was tracking down the right team of doctors to help him. Then learning what I could do (stretches/medication) to help. I keep up with research and look to see if there are any clinical trials that he qualifies for to be apart of.

22. How has this affected you as a Mom?

This diagnosis completely changed my life and my perspective. I think it really humbled me and leveled me in the sense that no one is immune to conditions like this. It does not matter who you are, what nationality you are, or your socioeconomic status- DMD forces you into a world that can be very frightening and overwhelming. Having a child with DMD has made me more patient, able to see the big picture in life better, and able to better celebrate all the small victories day to day and along the journey.

23. When was Jackson diagnosed with DMD?

Jackson was one week away from turning 4 years old when he got the official diagnosis.

24. Does someone keep watch on him when he goes to school?

Jackson has an aide that is with him in the classroom and he has been fortunate to have her from kindergarten up until currently.

25. How has this affected Jackson’s life so far?

Jackson’s “normal” is seeing lots of doctors, running tests/getting bloodwork, and knowing that he has this disease. He knows it affects his energy levels and that he has to take daily medication for it. He has to wear night braces on his legs to sleep, but other than those things I try to keep everything else as normal as possible for him.

26. Does anyone else in your family have DMD?

Jackson’s mother had genetic testing done shortly after his diagnosis and the testing showed that she is a carrier of DMD. She had not known previously and because she is a female (XX) she did not manifest symptoms. There are no other individuals in the family with DMD.

27. Does it affect his memory at all?

The protein dystrophin can affect portions of the brain, but typically DMD does not affect memory. Jackson is very gifted with his memory and often times I refer to him as an “elephant” because he remembers things so well and never forgets.

28. Does he like sports? If so, what is his
favorite team?

Jackson does not get into sports very much. He recently did an interview for the NFL about DMD for Clay Matthews and when the NFL asked him what he thought of football he replied, “I don’t like it”. Saying that to the NFL didn’t go over too well, needless to say he didn’t get put into that commercial ;0  (Get him talking about animals or the kiwi bird though and he will talk for hours about it!)

29. What is something he looks forward to for tomorrow?

Jackson gets very excited when he has an upcoming trip to look forward to. He currently is thrilled to be missing a day of school to come talk to the 7th graders about DMD. He also is looking forward to a trip up north over Memorial Weekend.

30. What would you say Jackson struggles with most?

I would say that Jackson’s biggest struggle is socialization. He gets very nervous around his peers and clams up. He has a hard time being himself at school and engaging with his classmates. He observes them all and knows all about them, he just gets quite nervous and shy during the school day.