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

Finding Life After Losing One was written by Nikki King & Alice Rampton.

Nikki was my college roommate and  is one of my very dearest friends.

Nikki contacted me a while back and asked me if I would be willing to write about some of my experiences with Jackson and having the knowledge that my child has a terminal disease and knowing that at some point that disease will take his life.

I was so honored to be able to contribute to her book. We’ve shared with each other the difficulties that each of our situations hold and while we never know what we can handle until we’re faced with it, we both have expressed our thoughts and feelings about how each of us doesn’t think we could handle each others situations.

In this book she shares her experience with losing her daughter, Taylor, in a tragic accident. Throughout this book there are excerpts from other parents who have lost a child.

I want to begin by sharing Nikki’s Story………….

One fateful day, July 27th, 2012, Nikki’s sixteen-month-old, Taylor, had a tragic accident. Family from all over the Pacific Northwest came together for a reunion. That night Nikki and her husband, Eric, were going dancing with some of their family. When the time to get all the kiddos ready to go to the babysitter’s. Unbeknownst to Nikki, Taylor had slipped outside through the front door. Eric went to move the car in preparation for leaving. Not knowing that Taylor was outside, he moved the car and Taylor was hit by the right front tire. He never saw her little body. Panic ensued. Eric rushed her to the emergency room. Nikki was in the kitchen and saw Natalie (her 5 year old daughter) rush in like she had seen a ghost. She happened to be playing with the dogs outside and saw Taylor under the car.  A short while later I got a phone call to go to the hospital, so I left the other 3 children with family. Upon entering the hospital all she could hear was her husband repeatedly saying, “I’m sorry. I’m sorry. Please don’t blame me”. The doctor said Taylor had died on impact.

Eric and I have stuck to the promises we made to each other that day. What we still struggle with today is the blame we place on ourselves. That’s not helpful either. The reality is that our personal situation would only get worse if we lost each other as a result of this tragedy. Taylor was born  because of our love, and together we strive to heal from this tragedy through our love.

Nikki later recalled that the whole week she would get an overwhelming feeling to look over her, smell her, kiss her, and hold her close. Do I think that was by accident? or was that divine? It was absolutely divine. When we get those nudges or ideas….we need to listen to them. I am so proud of Nikki for taking that time to listen and to have those last few snuggles, smells and kisses.

Death takes many forms: overdose, suicide, accident, disease, murder, and the unknown. We don’t pretend to understand the emotions or experiences of all parents who have lost a child.

The other author, Alice, has a story about what happened with her daughter Lora. You can read about that here:

There was a large mass on her left adrenal gland. It turned out to be a neuroblastoma. They had opened her abdomen up and found that the tumor was too large to remove. It appeared to originate in the adrenal gland and had begun to invade her other organs. She was given a 5-10 % chance of survival.  They did a surgery to remove what they could and then the tumor came back.

Still cradling her in my arms on the changer, Lora simply reached up toward something and took her last breath. Mark came beside me, and we cried as we realized that she was gone.

There are so many wonderful pieces of advice in this book and I have written down the ones I love below. Here is one excerpt from the book that I wrote about Jackson.

“Although you stand at my grave and weep, I am not here, I do not sleep. I walk on heaven’s golden streets and listen at my Savior’s feet. ”  -Susan Fisher, mother of Dallas Fisher (1988-1992)

“Grief is the price we pay for love” – Prince William, Duke of Cambridge

“And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in. That’s what the storm is all about.“

-Haruki Murakami

In this excerpt from the book I am discussing how I handled receiving the diagnosis. 

A child who loses his or her parents is called an orphan.

A woman who loses her husband is called a widow.

A man who loses his wife is called a widower.

There is no word in the English language for a parent who loses a child

 – it’s just unnatural.

“I’m convinced that the Lord may push us to the very brink of despair to test who our God really is. He tests us to see who we turn to in our hour of need. He blesses our lives, and then we can turn and express gratitude for those blessings. I don’t think I’ve ever been grateful for my trials, but I’m grateful for what I learn from them. I’m grateful for the tender mercies that I see because of my trials.” – Nikki King

As the world you know crashes down around you and chaos becomes the norm, the one thing you have control over is your attitude. You basically have two choices: 1) You can choose to be bitter and angry 2) You can choose to learn from and accept your new reality.

“We aren’t always responsible for the circumstances in which we find ourselves. However, we are responsible for the way we respond to them.”

“Those we love don’t go away, they walk beside us everyday, unseen, unheard but always near, still loved, still missed and very dear.”

“A good friend is….a safety bar on your emotional roller coaster, a therapist without the high hourly fee, a nonprescription mood enhancer. “

To purchase the book you can get it HERE on AMAZON.

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