When Halloween came around this year we were all set with our costumes. Jackson was dressing up as Perry the Platypus and yes it was a homemade costume that my dear friend made for him! It was a replica of his favorite stuffed animal, a beanie boo named Perry.

Little brother was going as an inflatable dinosaur. I was going to be a skeleton, but that day during clinicals, I had one of the worst days of the year and came home in tears. I most definitely didn’t want to go out in the terrible weather we were having that day, which was high winds and rain, to go trick or treating. I sat the boys down and we discussed our options. They quickly both agreed that they didn’t want to deal with the weather either and would like to pass out candy.

Once the time came, they happily handed out candy and then about 3 minutes in…little brother realized that he wanted to just run to a couple nearby houses to trick or treat. He did that and Jackson and I continued to pass out candy. About 4 minutes after that Jackson saw kids running around outside and noticed that the rain had stopped. He asked if he could then go trick or treating.

So I forfeited my costume for warm clothes, Jackson and his little brother forfeited their costumes because 1) an inflatable costume + high winds= TROUBLE. and 2) a homemade platypus costume once wet will be like dragging heavy material around. So we got out our old costumes and Jackson grabbed my old dinosaur costume and his little brother grabbed Jackson’s old corgi costume. We headed out in the cold and wind and within 5 minutes it began to rain again. I had jackson’s new mobility scooter with me and let him know that whenever he needed it, it would be available.

We walked around the neighborhood for about 20 minutes and Jackson began getting very fatigued. He took a rest in the stroller and I pushed him around for the rest of the night. What happened after that became quite interesting to me. As I pushed him up to the various houses people made random comments like “can he get out of there” (they didn’t want to have to walk off their porch). Another person said, “ahhhh…i don’t want to walk over there because my socks will get wet”. This happened over and over again. To the point that little brother began getting the candy for his brother. Then Jackson just gave up. He said “forget it, i want to go home”.

We began heading home and we were cold, wet, and tired. As we rounded the last road there were a few houses with their lights on. Little brother ran to one and I kept pushing Jackson. Then all of a sudden I looked up and saw an older gentleman walking not only out of his house and onto the porch, but walked all the way down his driveway. He came right up to the boys and told them to pick as much candy as they wanted. Jackson took one. He said to take more, but Jackson insisted on just one. I thanked him and we made the trek home.

It was such a simple, yet profound thing that this gentleman did. He was observant and although he didn’t know the situation, he could tell that something was different. And here’s the biggest part…..HE DID SOMETHING ABOUT IT.

The simple act of making the situation easier and not drawing attention to it. Just acting and making such an impact in our life.

This man probably had no idea how it impacted us since Halloween. I have thought about it constantly and how when the holidays rolled around I wanted to do something as a ‘Thank You’. So I recently got some chocolate chip cookies together and made a little gift basket up and wrote down the story in a card to deliver. I went over to the house and knocked on the door. A man answered and I wasn’t sure if it was the same person or not, so I introduced myself and asked if it was him that was there on that Halloween night. He said that it was his Father who had been there.

I told him that his Father is a good man and told him the story of what happened and how that simple act of kindness made such a significant impact on our lives. How grateful we were. He remarked “that’s my Dad”. Of course when I began talking about Jackson and his struggles with Duchenne Muscular Dystrophy I began crying. I then finished what I was saying, handed him the cookies and card…and by this point his 2 daughters had gathered to hear what was going on.

I am so very thankful that kindness can be found in negative situations. I am grateful to this man who went out of his way when he didn’t have to. I am also glad that i took the time to acknowledge this individual and hope that others can become aware and less ignorant when they see someone who may be different and instead of judging or turning away, they lean into the situation and try to help in any way possible.

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.