I recently read this short write up by Ricky Tsang.

He is one of the oldest living individuals with Duchenne and he has such a great outlook on it.

I was so inspired by his words here, they are written from the perspective of a Duchenne child to his Mother.

To read more about Ricky’s journey, click HERE. 

Dear Duchenne Moms,

You’ll have to be much stronger than you already are.

If no one should tell you, everything is not going to be okay.

Nothing gets easier, while life remains merciless.

I know it well, having to face this disease for such a long time.

I may be at the end of the road, but continue on because some things are necessary.

There was never an option to begin with.
The cold, hard truth is that you already know that it wasn’t your fault.

However, you still blame yourself for giving your child Muscular Dystrophy because you think guilt gives you greater motivation to love your son the way he deserves.

Darling, please always keep in mind that hurting yourself is also hurting us, and we would rather face more hardships than to see the silent despair in your eyes.

It’s just, the future is even tougher. You must withstand coming to terms with things that human beings weren’t meant to come to terms with. There will be many tears.

I remember when things got bad. You were there to hold my hand, and yet despite being in your sweet comfort, I was by myself.

This is life, Mom. Everyone is alone at the end of the day. We are simply alone together.

My dearest mother, through your unconditional love, you’ve shown that adversity is not something we overcome.

Instead, it’s a fire we must walk through.

And you will lose me, eventually.

I promise.

Though, on that day, I will run free.

I hope you know how grateful I am for your genuine love, for in your presence, I was always unafraid, unaffected, and unmoved.

You were never my world, but my heaven, my love, my conscience…

So from tonight and onwards, I want you to be free, from the worries, feelings of guilt, and all the bitterness that existence has consumed us with.

I hope your afternoons are filled with orange marmalade skies.

I hope you surrender to the sunrays that kiss your face when you run your fingers along the walls of an empty hallway.

I hope you know how much you’re loved, no matter where I am, watching over you for eternity.

Love,
Your Duchenne Boy

“It’s the stuff that we avoid because it hurts

that is exactly the stuff we need to tackle.”

Back on February 2012, I wrote in my journal about the hardships that I was going through and the unknown I was walking into with Jackson.

At that time I took Jackson to the hospital for an echo of his heart,

lots of bloodwork,

and some x-rays.

I got the test results back and the echo of his heart was normal as were the x-rays.

But the bloodwork came back with extremely high numbers indicating that

something big was still going on inside my little boy.

Our pediatrician got me hooked up with a pediatric neurologist and I waited a few weeks and finally went in to see him.

It was February 22nd, 2012.

I remember that day so well, and I always (unfortunately) will.

I remember playing with the boys that morning and having a grand ol’ time,

I remember I wore this cute pink top because it was my favorite color,

i remember i took this picture…….

this picture now has significant meaning to me.

It’s been over  2 years since that day and this photo signifies

the last day I had where I felt joy.

Full, unbridled, optimistic, full of life happiness…..JOY.

Because I thought I knew hard before that day.

See, my whole life I have been a very happy, optimistic person.

I actually have a HUMONGOUS love of quotes and I’ve had books where I write my favorite quotes down ever since I was a little girl.

I’ve always been drawn to them,

I’ve always written them down and hung them all around,

they’ve gotten me through all sorts of things.

So as I look back, I think “hmmm….maybe there was a reason why I’ve always loved quotes.

Maybe I was building a library for myself for when something really terrible happened,

I would have plenty of books of mine to go back and look at and uplight myself.”

February 22nd, 2012 Jackson and I went in to see this specialist and had no idea what to expect.

But the worse thing ever was about to smack me in the stomach with the news the doctor would give me.

He took a very quick exam of Jackson and mumbled some things and calmly said,

“I think your son has either Duchenne or Becker Muscular Dystrophy”.

Just like that. As cold as stone.

Actually, I can’t even get across to you how cold he said it to me.

I had NO IDEA what that meant and as I scrambled to write those things down and asked him how to spell it.

I will never forget the sadness,

the grief,

and in that moment my stomach fell down to my knees

and I couldn’t breathe right.

He told me to get a genetic test done on Jackson and in 6 weeks I’d  know the answer.

and then he walked out.

He also said some rude comments to me, but I will not share them and will try to put them out of my memory.

I walked out, went to the car, tried desperately to hide my emotions from Jackson who was happy and had no idea what was going on.

But I failed.

I burst into tears and I just remember thinking, “I don’t understand”.

See, I hadn’t done ANY research and didn’t know a thing about what the doc was talking about.

Later that night I googled it and this is what it said:

 Duchenne muscular dystrophy is an inherited disorder that involves rapidly worsening muscle weakness.

Duchenne muscular dystrophy is a rapidly-worsening form of muscular dystrophy.

By age 10, the person may need braces for walking. By age 12, most patients are confined to a wheelchair.

There is no known cure for Duchenne muscular dystrophy.

Duchenne muscular dystrophy leads to quickly worsening disability.

Death usually occurs by age 25, typically from lung and heart disorders.

I read that and I just sobbed, and sobbed, and sobbed.

I couldn’t catch my breath.

I was just sitting there shaking.

Then I ran to the bathroom and got terribly sick.

I shut my laptop, I was numb, I couldn’t sleep.

I went into Jackson’s room and just laid next to him, and cried.

I eventually went to my room and fell asleep, but I woke up at 3 am, got sick again, checked on Jackson, and then slept until 4am.

Right then in the haze of waking up I thought this whole thing was a dream.

I thought to myself,

“What a horrible dream”

and then I realized it wasn’t a dream.

It all hit me like a ton of bricks, like I was literally getting the crap beaten out of me.

I couldn’t go back to sleep.

I just laid there…..numb.

I took him to school and came home and I just sobbed in bed.

I decided to get out of the house so I went to Costco, but it was no luck, I wandered around like a zombie and didn’t eat all day.

I just felt so empty.

I am just so hollow inside.

I don’t know why this is happening.

Later that night the bishop from our church come over and gave Jackson and I blessings.

I really think it helped.

My heart felt calm.

Everyone just keeps trying to reassure me that the test will come back negative,

that doctors are wrong all the time,

but I know deep down that it isn’t the case.

I can feel it,

I think he truly does have this disease,

and that’s why I’m breaking down so bad right now.

I was driving to pick up Jackson from school and I was blown away by the weather.

It was a gorgeous sunny day when I got on the highway and then about 2 seconds later I hit a giant rainstorm.

I had to capture this crazy phenomenon, mostly because it felt like my life.

In the rearview mirror was the beautiful day, and up ahead this is what I was heading into.

It was total symbolism for me in the fact that looking back things were easy, but now I was headed into the eye of the storm.

Three days later…

Ever since I’ve gotten this news it’s been hard to eat, sleep, do anything.

I’ve felt like dying,

I’m constantly in the bathroom getting sick,

I feel hollow,

I’ve been so cold,

I barely get through the day and fall straight asleep at 10pm,

but then I wake up in the middle of the night and can’t settle my mind enough to get back to sleep.

I don’t do laundry,

I don’t clean the house,

I haven’t made a meal,

I haven’t worn makeup,

I haven’t watched tv.

I feel like a shell of a person,

i don’t smile,

my heart hurts,

i’ve cried so much.

This morning I woke to Jackson puking all over himself and his bed and his pants were soaked with poo.

Logan was delightfully in his room screaming at the top of his lungs.

5 bags of puked on bedding.

I don’t know if it was the blessing I got a few days ago or because I was FORCED into doing laundry, but today was the first day that was o.k.

I didn’t spend the majority of the day crying.

I spent the day playing with Jackson,

I got him new “dino” sheets,

we watched “Dolphin Tale” while cuddling on the couch,

we painted our feet with fingerpaint  and made a family collage.

I feel warm again inside.

I feel like I am getting a teeny tiny bit stronger.

I know he is my angel.

A few weeks later at church I found this quote  in our monthly newsletter and it really spoke to me:

“There must be a gap of time when things don’t make sense, when confusion ruffles our peace of mind.

But that gap is a special place.

The gap is where faith is found.”

Then on April 2nd I got the news.

The test results came back,

they were positive.

Jackson has Duchenne Muscular Dystrophy.

Last fall my friend Tammy hosted an amazing event aimed at gaining money for Duchenne Research.

She brought out Sarah Burgess, who you may recognize from American Idol, who is supremely talented.

Sarah’s little brother was diagnosed with Duchenne Muscular Dystrophy as well and she now makes it her life mission to bring awareness through her music and talents to try to find an end to Duchenne.

I had the pleasure of meeting Sarah for the first time this past summer in Chicago at the Parent Project Muscular Dystrophy Connect Conference.

She is so sweet and it was wonderful to again see her and watch her perform.

At the All in For Duchenne Event, Sarah sang a lovely song she wrote called “The Spoken Word”.

To say that I was sobbing during it would be quite the understatement.

For she so eloquently put into words,

just how I feel so very often.

This is the lyrics from her song and then her video is underneath that.

I encourage you to watch it and visit her website to keep up with her and see how she is changing the face of duchenne.

Here is some more information on her and her partnership with Cure Duchenne.

The Spoken Word by Sarah Burgess

Everytime I’m asked to speak at an event, I always shudder when I give my reply.

Of course it’s a yes, I want to help.  Whatever you need.

I’m not nervous. I’m just hoping to God that my knees don’t shake, and I don’t cry.

My little brother, Jacob, he has a condition called Duchenne Muscular Dystrophy.

It’s a devastating, horrible, ruthless disease that robs little boys from growing up and becoming men.

I’m 27, married, and I’d like to think I’ve experienced a whole heck of a lot.

I’ve pursued my dreams and traveled overseas.

Don’t google Duchenne.

But right away my mind told me to disagree.

I fired up my laptop and typed the letters D-U-C-H-E-N-N-E.

I read that my little brother is going to have limited days.

This disease affects one out of every 3500 boys.

And there’s no cure or medications to help his muscles stay.

At first I didn’t believe Jacob’s diagnosis.

I mean, they must’ve gotten it wrong.

With my world crashing in all around me, I knew for Jacob, that he needed his family to be strong.

I never thought something like Duchenne would show up in our lives.

Duchenne is violent tornado, ripping and destroying families, making it close to impossible to survive.

Being a big sister is never going to be an easy thing, but I know, whatever you do, you have to keep moving forward.

I refuse to live life governed by the things I cannot control, and instead live life doing the things that I can.

I trust and I believe in a God that knows exactly what he is doing, for he knows the ones that can change this outcome.

I’ve stopped questioning about how our lives will be centered around Duchenne, I’m reminded of the hope every single time I bow my head & listen to the words, Amen.

My brothers only gripe is when he loses at a level on a video game, yet he never complains when falling and failing to keep up with his friends, knowing that his muscles just don’t work the same.

Everytime Jacob giggles and laughs, or looks at me with those big, blue sparkling eyes, I choose to ignore the ones who don’t understand or have comments that are snide. People that whisper and say, “What about your life?”

Over a year ago, I made the decision to use my gifts and talents to help my brother and every other afflicted by Duchenne. It’s the toughest road I’ve ever taken, but it’s one that I would choose over and OVER  AND OVER AGAIN.

You may not understand the pain, or the little struggles a Duchenne family faces everyday.

 Just like a thief in the night, never expecting, without warning,  your life can completely change.

Life’s about cherishing the little moments.

Loving, celebrating, appreciating each day.

They know what causes Duchenne and they know how to fix it.

But the lack of funds has haulted a cure from coming into motion.

I will use every bit of my spoken emotion, do whatever I can to cause a commotion, convince you of my undying devotion, to have just one of you help cure Duchenne.

Will you help?

Together we WILL runaway.

Here’s the video of it: