Don't Kill Their Happiness

This is my brother Ben.

He is one of the happiest people I have ever known. He is always smiling. Always trying to uplift. Always making the world a better place.
Do you know what the sad thing is?
Doctors say that Ben will be dead by 21.
Ben, along with his twin sister Rebekah and my other sister Rachel have a rare genetic disease called Ataxia-Telangiectasia. Basically Ben, Bekah and Rachel are missing a protein in their brain called the ATM protein. Their bodies don't repair DNA correctly and their cerebellum is deteriorating rapidly.
This is a picture of Rebekah and Rachel.

These beautiful children. My siblings. My friends.
They are all supposed to be in wheelchairs by the time they are 10.
Not able to speak by 14.
Dead by 21.
And while we are breaking a lot of these molds and predictions with so many prayers and a lot of research, (Mostly done by my incredible Mother) their bodies are still deteriorating. More slowly than other A-T children, (My siblings are in the top 5% in the entire world as to how well they are doing) but still going downhill.
Think about that for a moment.
These children have lived their entire lives with this knowledge.
Yet... They are still so exceptional.
Ben, as mentioned before, is so happy. So very happy. He glows. And although we can't always understand what he's trying to say, we can see the way his eyes light up with a soul too big for his body.
And Rebekah, she is so sweet. What a tender and loving soul. When I walk into the house, most of the time the first thing I hear is Bekah running down the hall to give me a hug. She's always serving. Always trying to make life better for everyone around her.
And Rachel. She's just spunky. But in a cheerful sort of way. She's so happy.

I believe that God gave them the gift of joy and love to be able to deal with the lives they have been given. I don't know how else to explain it. I don't know if I could be the way they are in the situation they are in. I don't know if I'm strong enough for that.
Sometimes, it hurts. They try so hard to be like everyone else. I don't even know if they realize that they are different most of the time. But they are. The older boys, Spencer, Enoch, and I, we're Ben's idols. Anything we do he will do in a heartbeat. Spencer, Enoch, and I are all very good athletes.
But Ben... Chances are he never will be.
His great dreams and hopes all lie on the baseball field and in the football team.
But those are dreams that he probably will never accomplish.
He probably will never be an MLB player. He'll probably never step out onto Yankee Stadium and hit one over the fence. He is just not physically capable of that type of thing.
And one day, he's going to realize that.
And it breaks my heart.
Bekah, her greatest aspiration is to be a mother. It's her dream. But... She probably never will be.
She probably will never have her own children.
Never rock her baby to sleep.
Maybe never even marry.
And it breaks my heart.
Rachel is too young to really tell what her dreams are. But chances are...
If they're a pursuit that extends past mid-twenties, she will probably never attain them.
And again, it breaks my heart.
They don't have very long on this Earth without the revelation of a major miracle.
So why would we make their lives anything but wonderful?
Why not let Ben try baseball?
Why not let Rebekah play with dolls?
Why not let Rachel just be herself?
Why not treat them like they're a normal kid? Maybe give them some hope.
The doctors... They've never said anything to Ben, Bekah, and Rachel about hope.
They've only said to take these drugs and try to live another year.
And yet hope is what is keeping them alive. It's the reason they are in the top 5% in the world for how well they're doing. It's the reason that at the age of 10 Ben and Bekah still ride bikes instead of wheelchairs. It's what allows them to be happy.

When people like this cross your path in life, don't treat them differently than anybody else. Don't pretend like they're disabled, because they're not. I hate the word disabled. They have the ability to do just as great of things as you and I do.
Don't kill their joy.
Don't focus on the bad things. Instead lift them up. Tell them how wonderful they are. See the light that they contain. Give them your love. I believe that the thing that kills more people than anything else is a lack of hope, and a focus on the bad things that could happen. Nothing is certain. It is not certain that my siblings will be dead by 21. To be honest, I believe that they will live full and long lives. I really do. I believe that Bekah can one day be a mother. I believe that Ben can one day be a professional athlete. I believe that Rachel can fulfill all of her dreams.
I didn't say that it wouldn't take work. It will. For these things to happen, we basically have to change the genetic structure of their bodies. We have to heal them. But God never said to give up hope in any circumstance, so we shall hold fast to hope and keep the faith.
Maybe they'll live. Maybe they'll fulfill all of their dreams. Maybe they'll change the world.
Maybe they won't.
Regardless of whether they do or don't, I believe in them. And whether my belief is well grounded or not, one thing is certain.
In the end, all will be well.
All will be well.
And Ben, you go, Superman.