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Superhero Jackson

Duchenne Muscular Dystrophy Big battles

 

 

Duchenne Muscular Dystrophy Big battles

 

“God doesn’t give special kids to special parents.

He takes ordinary, imperfect people, and gifts them with his greatest treasures.

And therein, he creates special parents.”

Jackson- DMD

This boy. 

My dear, sweet Jackson.

Who at (almost) 4 years old was diagnosed with Duchenne Muscular Dystrophy.

Who is now 8 years old and knows a little bit about the disease.

Who when he gets tired and fatigued or when he can’t keep up with his peers, he says (holding his head low)  “That’s the Duchenne”.

I hate that I have to watch my little boy go through this terrible disease.

I hate that I feel helpless to overcoming it.

I hate that sometimes he cries about wearing his night braces.

And as much as I explain the reasons to him, I get it, it’s uncomfortable. It’s painful. I wouldn’t want to sleep with them on all night either.

Jackson- DMD

and we talk about all sorts of other diseases that people are afflicted with,

and I try to let him know that everyone is different and that we all struggle with various things.

That we should always be kind, because we have no idea what other people are going through.

And then I wonder when he complains of pain.

I want to know what that feels like,

I want to take his pain away,

I want to put myself in his shoes and experience the disease,

because no little boy should face the future that he’s going to have to.

Jackson- DMD

But then I look at his adorable face and his piercing brown eyes and I think to myself, Yes….it’s true.

We all have various obstacles to face. And while this is a major one that will one day take his life….

that’s not how I’m going to view it.

I am going to make the most of each day.

I am going to create the best life possible for him.

I want him to know he is more than his disability.

That he is smart, capable, and so loved.

So tonight as I read him a story about the Exotic Birds of the World I will look at him with pure love and think to myself

Thank You. 

Thank you for teaching me so much about life that I never would have even thought about.

For not only teaching me about love, patience, and determination. But for helping me become a better human being.

One who fights for what is right and doesn’t back down, who creates awareness & gets involved in the community.

Who now loves reading animal encyclopedias and studying various dinosaur era’s only to mispronounce the name of the dinosaur and have you correct me.

For teaching me to celebrate the small things in life. Specifically today, when we went to the aquarium and you began beaming when you saw the “Deep Sea Fish Area”, and you grabbed my hand and said, “Don’t be scared mom, it’s gonna be dark in here. But that’s the only way to see the flashlight fish.”

Buddy, I know that I was meant to be your mother and I celebrate every aspect of who you are.

It is an honor to raise you and watch you grow into the little man that you are becoming.

You make me smile and laugh uncontrollably each and every day.

I love you,

Love, Mom.

Jackson- DMD

 

 

Jackson- DMD

Jackson- DMD

Jackson- DMD

Jackson- DMD

“May you always run free”.

-Mom

 

 

 


Scooter Modification for Duchenne Muscular Dystrophy Diagnosis

pride scooter modification

pride scooter modification

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.

pride go go scooter modification

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

pride gogo modification

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.

pride scooter modification

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.

pride scooter modification

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 

pride scooter modification

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.

pride scooter modification

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.

pride scooter modification

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

 

pride scooter modification

Then the board is completely attached and ready for roll!

pride scooter modification

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

pride scooter modificationI showed it to my boys and they were beyond excited.

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

pride scooter modification

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

pride scooter modification

Video of boys riding modified scooter around

 

pride scooter modification

 

 


Finding Life after losing one

finding life after losing one book review + joy in jacksons journey

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.

finding life after losing one book review + joy in jacksons journey

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.

finding life after losing one book review + joy in jacksons journey

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.

finding life after losing one book review + joy in jacksons journey

“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. finding life after losing one book review + joy in jacksons journey

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.

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“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.


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