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

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!

_____________________________________________________________________________

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.

In the big things,
in the small things,
live gratitude.

In the pain,
and in the joy,
live gratitude.

Through laughter,
and through tears,
live gratitude.

It truly is a choice-
It is not happy people who are thankful, it is thankful people who are happy.

Take a moment today- live gratitude.
Whisper it in the joy of simple things- the green grass, the blue skies- and hold onto it in midst the hard things, whispers of gratitude will change your life.

I promise. I am living proof.