” 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

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.

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.

“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

“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

“I want to talk about this website called https://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

“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

” 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

” 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

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!

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!“

“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

I stumbled across this blog post about a woman seeing another woman she knew in the grocery store a few weeks after her daughters death.

It was written so honestly and genuinely that I couldn’t help but want to share it.

I feel like SO MANY TIMES we just don’t know the right words to say,

so instead we SAY NOTHING, and that hurts….like really bad.

Because guess what?!

All the other people you know are also feeling that way and SAYING NOTHING, so you are left with grief and sadness and there is NO ONE THERE.

This is the story of saying SOMETHING, even if that is only, ” I don’t know what to say” and acknoledging the person.

Because when it comes down to it, isn’t that what we all want?!

To know that we are seen and wanted!?

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Article Below:

I stood in the produce section of my local grocery store, my hands comparing the weights of cantaloupes. Heavy enough, I thought.

I sniffed its stem, searching for that sweet spot, while my palms rubbed over its rough netted surface. My breath froze when I glanced up across the piles of lemons and avocados to see her handling the tomatoes.

I stared at the cantaloupe. I hoped she hadn’t noticed that I noticed her.

I didn’t know what to say.

She lost her teenaged daughter in a horrific car crash several weeks earlier — five teens died on their way to school.

This mom was forced to give up the gift God had given her seventeen years before.

I felt heavy, as if my feet were rooted to the floor. I placed the cantaloupe in my cart and strained to take a back step towards the broccoli — so my back was to her.

She probably knows I am here.

I was uncomfortable. I fiddled with the Brussel sprouts. Now what do I do? I questioned. Coward, I thought.

When bad things happen, people fear they may say the wrong thing — even when they are trying to be helpful.

I remember the depths of my emotional pain many years earlier when I miscarried my twin girls. God held their tiny bodies in His arms before I did. Even though well-intentioned women whispered, “You’re young enough to have more,” I knew they cared because they arrived by my side, wanting to comfort me. Most often, their comments came with soft eyes, a nestling hug.

What I found worse, though, was when people avoided me, and said nothing at all.

One of my own brothers never called. Months later, he sent me a letter, asking for my forgiveness. One friend dodged me in Kmart. From the corner of my eye, I watched her dart down the automotive aisle. Another woman, pregnant, turned away from me in the church parking lot and began a conversation with someone else.

They could have simply listened for a minute, helped me heal.

Now the jagged edges of discomfort gouged my heart because I’ve been just like the women at Kmart and church, dodging people I didn’t know how to talk to. I’ve neglected to send the card, pick up the phone, pay a visit, or approach them in the store.

I took a deep breath.

Her baggy jeans and oversized flannel hung on her thin frame. Hollow eyes replaced the stubborn jaw I remembered.

I walked up to her, acting surprised to see her. I think she was on to me, but she didn’t draw attention to my cowardice.

I found the courage to say “Hello.” My arms jockeyed my cart so I could get closer to her. I tried to find words that wouldn’t get between us. The words I found were the only ones I knew how to say. “I don’t know what to say. I am sorry.”

We hugged. Eyes welled.

Silence.

Now what do I say? I wondered.

“Therefore encourage one another with these words. {1 Thessalonians 4:18}

In His most subtle of ways, the Lord guided me.

I used her daughter’s name — Tonia. “I’m sorry I never thanked Tonia for her incredible work with the school sports program. She taught my sons so much about life and basketball! They spoke highly of her.”

These simple words brought her face to life.

“Let me tell you a story about Tonia,” I offered. It was a funny story, one she didn’t know — one my sons had shared with me months earlier, when she coached their summer basketball camp.

Her eyes held mine, asking for more — more of her daughter. It was as if she were saying, “Please, keep her alive.”

I listened, and remained alongside her as she shared. I prayed it was healing for her. It was for me. We stood there talking for a long time, as shoppers walked by.

The original article was written by Sharon Gibbs on her blog, (IN)Courage 

I read this article from one of my favorite human beings ever, Glennon Doyle Melton, who is the author of the book, Carry on Warrior and the author of the blog, Momastery. 

She is phenomenal in a thousand different ways and I hope to one day meet her and when I do I will give her the BIGGEST hug, because she inspires me on a daily basis.

So in 2011 she posted this BEA-U-TIFUL article about school and I have read it countless times and tonight while reading Jackson and I came across it and I read it to him.

It was all it took for me to read it to him through tears, and I knew I just had to share it with all of you wonderful people!

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Hey Baby.

Tomorrow is a big day. First grade – wow.

Jackson – When I was in first grade, there was a little boy in my class named Adam.

Adam looked a little different and he wore funny clothes and sometimes he even smelled a little bit. Adam didn’t smile. He hung his head low and he never looked at anyone at all. Adam never did his homework. I don’t think his mom reminded him like yours does. The other kids teased Adam a lot. Whenever they did, his head hung lower and lower and lower. I never teased him, but I never told the other kids to stop, either.

And I never talked to Adam, not once. I never invited him to sit next to me at lunch, or to play with me at recess. Instead, he sat and played by himself. He must have been very lonely.

I still think about Adam every day. I wonder if Adam remembers me? Probably not. I bet if I’d asked him to play, just once, he’d still remember me.

I think that God puts people in our lives as gifts to us.

The children in your class this year, they are some of God’s gifts to you.

So please treat each one like a gift from God. Every single one.

Baby, if you see a child being left out, or hurt, or teased, a little part of your heart will hurt a little.  I want you to trust that heart- ache. Your whole life, we want you to notice and trust your heart-ache. That heart ache is called compassion, and it is God’s signal to you to do something. It is God saying, Jackson! Wake up! One of my babies is hurting! Do something to help! Whenever you feel compassion – be thrilled! It means God is speaking to you, and that is magic. It means He trusts you and needs you.

Sometimes the magic of compassion will make you step into the middle of a bad situation right away.

Compassion might lead you to tell a teaser to stop it and then ask the teased kid to play. You might invite a left-out kid to sit next to you at lunch. You might choose a kid for your team first who usually gets chosen last.

These things will be hard to do, but you can do hard things.

Sometimes you will feel compassion but you won’t step in right away. That’s okay, too. You might choose instead to tell your teacher and then tell us. We are on your team – we are on your whole class’ team. Asking for help for someone who is hurting is not tattling, it is doing the right thing. If someone in your class needs help, please tell me, baby. We will make a plan to help together.

Jackson – I do not care if you are the smartest or fastest or coolest or funniest.

There will be lots of contests at school, and I don’t care if you win a single one of them. I don’t care if you get straight As. I don’t care if the girls think you’re cute or whether you’re picked first or last for kickball at recess. I don’t care if you are your teacher’s favorite or not. I don’t care if you have the best clothes or most Pokemon cards or coolest gadgets.

I don’t send you to school to become the best at anything at all. I already love you as much as I possibly could. You do not have to earn my love or pride and you can’t lose it. That’s done.

I send you to school to practice being brave and kind.

Kind people are brave people. Because brave is not a feeling that you should wait for. It is a decision. It is a decision that compassion is more important than fear, than fitting in, than following the crowd.

Trust me, baby, it is. It is more important.

Just be grateful and kind and brave. That’s all you ever need to be.

Take care of those classmates of yours, and your teacher, too. You Belong to Each Other. You are one lucky boy . . . with all of these new gifts to unwrap this year.

I love you so much that my heart might explode.

Enjoy and cherish your gifts.

And thank you for being my favorite gift of all time.

Love,
Mama

*the article has been altered to fit our story and only certain paragraphs have been shared.

The original article can be read here.