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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