Category Archives: Duchenne Muscular Dystrophy

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.


RallyCap

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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.

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

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

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

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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!

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

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

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

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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!

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

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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.

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PURE JOY.

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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


Duchenne Research Project

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” A young boy name Jackson was recently  diagnosed with Duchenne and is spreading the message all over the world.

At seven years old he has changed the world with his amazing and inspiring story!”  – Sydney

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Recently I was able to work with a Perrysburg Junior High’s 7th Grade Language Arts Class to do a research project on Duchenne Muscular Dystrophy.

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It was such a wonderful opportunity to share our story with these amazing students. They had to get onto Joy in Jackson’s Journey Website and using that, write a paper on what Duchenne is, how they felt about it, and to share it with two other people.

I went in one afternoon and spoke with the kids….and cried, of course, because I hadn’t shared the story with anyone in a little while and seeing all these young, talented, eager students….it just made me emotional.

After speaking with them, I went back in had the opportunity to listen to them present their papers.

I cannot even begin to tell you how amazing it was watching these kids rattle off statistics about how Duchenne affects approximately every 3,500 male births. About how they told their friends and family about Jackson.

It was so reminescent of a few years ago when I had never heard of Duchenne.

These kids hadn’t either and it was heartwarming watching them learn and share about the disease.

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“Duchenne is really sad and heartbreaking and I wish it never existed. You are in gym, running around. People are so much faster than you. You decide you should sit down.  You can’t. It’s too hard!! You finally sit down and then after about 5 minutes you decide to get up again. You’re having more trouble. You finally get back to gym and get very upset because you know why you can’t run as fast as others, why you have trouble sitting and standing. You have Duchenne Muscular Dystrophy.” – Rachel

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“Have  you  ever  heard  of  Duchenne  Muscular  Dystrophy?  It  is  also  known  as DMD  for  short.  

It  is a  severe  form  of  muscular  dystrophy  caused  by  a  genetic  defect  and  usually  only  affecting  boys.  This  rare  disease  is  mostly  common   in   boys  because  they  do  not  make  the  dystrophin  protein  in  their  muscles.

First,  only  about  1  in  every  3,500  people  have  DMD.  And  that  one  person  is  someone  named  Jackson.  Jackson  goes  to  Fort  Meigs  Elementary  school  and  is  in  first  grade.  He  was diagnosed   with  Duchenne  in  2012.  It  is  often  hard  for  Jackson  to  run  and  keep  up with  his  friends.  He  also  gets  really  sad  when  he  realizes  that  it  is  hard  for  him  to keep  up  with  his  friends.”  – Bella

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“I want to talk about this website called http://www.joyinjacksonsjourney.com/  It talks about this mother who finds out that her son has Duchenne and how she was sad and how she felt.”  – Cheyenne

“When she {Jackson’s Mom} read this she felt sick to her stomach and couldn’t sleep the whole night and was not feeling good the next morning either. That morning though when she woke up she had felt like it was all just a dream and that none of it was true but eventually had to accept the truth that her son did have Duchenne and would not be alive walking and using his legs. After she had been like this for three whole days she felt like a shell of a person”. – James

 

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“It’s the stuff that we avoid because it hurts that is exactly the stuff we need to tackle.”- Jacob 

 

 

“This has been the most shocking thing I have heard, more shocking than my dad getting cancer. A child gets this disease when they get the defective gene called dystrophin. Girls produce enough protein to fight this disease if they get a bad gene. This disease makes the child’s muscle’s change when the child grows, sadly killing the child when fully grown.

This disease DESPERATELY needs a cure, because there is nothing right now you can do to fight it. I hope that there can be a cure soon, so nobody has to go through this pain. I hope Jackson is doing well and hopefully there will be a cure very soon.” – Joshua

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” I hope that scientists help find a cure to Duchenne, If you don’t know what duchenne is then please look it up and support and help.” – Jude

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” I feel bad for parents whose kid got the disease because it’s heart breaking news to hear. Their kids will be sad to because they will want to be able to do what the others kids do but they can’t. The parents are really sad knowing that there kid can only live for a short period of time.” – Cameron

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I am SO very thankful for this opportunity to share our story with others and to help educate children on Duchenne Muscular Dystrophy.

A few weeks later it was even featured in the local paper!

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One sweet girl even knew how much Jackson LOVED Angry Birds, so she brought him a game that she used to play and wanted him to have it. She even attached a super sweet note inside that said, “Jackson you are the bravest person in the world!

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“A side note to Jackson or anyone else with Muscular Dystrophy, never give up and always keep fighting.

 Enjoy life while you have it.”  – Kolton

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