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.

I’ve always heard that age 8 was the time to be fearful.

At age 8, DuchenneMuscular Dystrophy seems to finally catch up with the body and weakness begins.

When Jackson was first diagnosed at (almost) 4 years old, I heard horror stories

about this age. And I set the idea in the back of my mind and I figured I’d just deal with it when the time came.

Well, the time has come.

Jackson turned 8 in April and all was well. My mommy heart soared and I thought “Yes! We have kept Duchenne at bay. This is great, we’ve beat the odds!”

Then a couple months went by and Jackson began getting weaker. He began randomly falling. He would have leg cramps and leg pains and I didn’t know what to do.

I would massage his legs and do the best I could.

I took him to see his specialist and during that trip he confirmed that Jackson was indeed getting weaker.

Months earlier I ordered a Pride Go-Go Scooter because I try to be one step ahead of Duchenne.

This is the Pride Go-Go Scooter that I have. 

It folds up nicely which is incredible! 

When I got it out and introduced it to Jackson he immediately was upset and couldn’t understand why he needed a scooter at his age. I explained his muscle weakness and how it would help him to get around without getting so exhausted.

He still was upset. As a Mom I wasn’t sure how to quite handle it. Jackson’s little brother, Logan, had quite the opposite reaction. He thought the scooter was the coolest thing ever.

Knowing that, I figured I’d play off of that and try to figure something out.

Then I had an idea and didn’t know if it would even work or be an option…BUT I knew I had to at least try.

So I began looking up Scooter Modifications and I got nowhere fast.

I called and emailed the company and all I was told was that there was no device or way to modify the scooter in a safe fashion.

So then I got to work and began brainstorming on my own.

I thought it would just be perfect to develop some type of skateboard/scooter board attachment.

I went to my local baby boutique called Lullaby Lane and spoke to a lovely gal named Paige.

She was so sweet and patient and listened to my crazy idea.  

She had some scooterboards that we tried fitting on to the scooter and I ended up getting two and taking them home to see if/how I could attach them.

I ended up purchasing the  UPPaBaby Vista Piggyback Ride Along Board 

I used a combination of tools to attach the board to the scooter. Here is the supply list and directions on how to build it.

Materials Needed

Thredded Rod, the diameter of the hole of the scooter

UppaBaby Scooter Board

6-inch long square 5/8″ aluminum tubing, cut to size

Drill

10/32 screws with washers on both sides

3/16″ rod (18 inches long) threaded on both ends with a nut or a fastener to keep it attached.

These pictures show very easily that to start you have to use the thredded rod to go through one side and all the way out the other.

This scooter has a tube that the rod goes through. Then I had it also go through the aluminum tubing.

Cut 2 holes into the aluminum tubing and place washers and screws on the sides to attach it.

Then the board is completely attached and ready for roll!

The best part too is that the scooter can still completely fold in half and the board isn’t at all affected.

I showed it to my boys and they were beyond excited.

Logan got on the back of it and off they went!

We took it out for a spin and sure enough it worked beautifully and the boys thought it was THE BEST THING EVER!

Video of boys riding modified scooter around

I’m always on the lookout for sporting programs that Jackson can take part in, but up until recently I haven’t been able to find all that many.

I’m the type of mother that never wants their child to feel left out or that they can’t do something.

I modify things for Jackson all the time so that he doesn’t feel left out, but with sports there really is no modification. It’s adrenaline, impact, running, and competition. All things that are not good for a boy with delicate muscles.

That recently all changed when I heard about a program called RALLY CAP SPORTS.

It is a sports  program for children and young adults with special needs. They want to create a world where people of all abilities can share in the joy of sports.

Their mission is to create positive sports environments fostering social integration, healthy living, and greater self-confidence for children and young adults with specials needs.

Each local league has passionate volunteers of students at universities. So the mission is actually two fold;

to provide transformative sports opportunities for the under-served special needs community and bring together communities by changing attitudes and opening hearts.

Here’s a short video showing Jackson at Rally Cap! {specifically at 2:09 for those impatient folks)

“Sports are a powerful avenue for people with special needs to discover new abilities, develop confidence, and find joy in every day. They also uncover a sense of belonging and inspire communities to open their hearts to people of all abilities.”   -Rallycap

Jackson has had the opportunity to participate in two of the sessions so far.

The first one he did was Basketball.

This was his first time being part of a program/team with this sport and he was thrilled.

He was so worried at first because he didn’t know how it would go and he had many questions.

“How can I keep up?”

“What if I get tired and need a rest?”

“I’m not going to be good enough.”

I explained to him how this was a special program that is different from the rest and that it would not allow him to overexert himself.

That if he was tired, he could easily take a break and come see me for a drink.

That he was in control of what he wanted to do and that if ANYTHING was too much, that he could stop anytime.

We went and he met the girls he would be playing with and pretty quickly a big smile appeared on his face.

They had hoops of all varying sizes and he could shoot at any which one he liked.

The pure joy on his face from making a hoop was enough to make my momma heart soar.

This program is seriously managed SO well and I couldn’t have been happier as a parent watching on the sidelines.

Afterward we had to celebrate by getting some ice cream of course!

Jackson knew right where he wanted to go and this time he ordered up a big sundae!

At basketball each week he would just light up and have such a blast.

At the end of the session he was honored and celebrated for being such a wonderful player and given a trophy.

As you can tell…..that MAY have been his favorite part!

Jackson also just did the Football/Cheerleading Session and yet again it did not disappoint.

He was way more apprehensive this time about doing this sport.

He’s never played football and knew that it was an impact sport.

When he first got there he refused to take part, I think it was a combination of fear + the fact that he just woke up from a nap.

But after I got out there and played a little football and then after he giggled at me and how terrible I was he gave it a shot!

We then found some hula hoops and that really made him giggle when we all tried to do various tricks with them.

and then near the end I couldn’t spot him and wasn’t sure where he moved to.

and then i saw it.

He asked his girl if he could do the cheerleading portion.

and all i needed to see were these 2 pictures to know that he was definitely enjoying himself.

PURE JOY.

If you would like more information about the RallyCap Sports program you can visit their website HERE.

“Children and young adults with special needs should be able to participate in and enjoy sports just like everyone else!”

-Paul Hooker, Founder