For little Grant: The gift of life

grant_severance.jpg

Grant Severance

“Come they told me…”

Dateline: Christmas

“Christmas is not as much about opening our presents as opening our hearts.”
~J.L.W. Brooks

I will play my drum for him, little Grant.

I will play my drum for all like him, little Grant.

And the keyboard is my drum.

And I will bang my keys, and I will bang this drum given me for all like little Grant who suffer from a rare disease and for whom there are no ribbons to hang, and for whom there are no telethons to give to, and for whom the drums are few.

And I will bang my drum loudly.

Loudly…

“…little baby…”

"Christmas is doing a little something extra for someone."
~Charles M. Schulz

Grant is 4 years old.

Grant has a rare disease called Batten Disease.

It’s estimated only about 500 children worldwide have this disease.

It is a fatal disease.

According to Grant’s mom, Vanessa Severance, “Life expectancy is six to 12 years of age.”

Grant’s dad Allen couldn’t finish that sentence while talking to me on the phone, it went quiet for several seconds as both Allen and I did the math.

Two years at worst.

Eight years at best.

For little Grant.

Batten Disease is a neurodegenerative disease where the brain cells swell up with protein, which cause the cells to die.

Google the rest if you must, I won’t, actually can’t say more about what this family is facing.

How do I feel…Merry Freakin’ Christmas.

Bang that drum.

I am not strong enough of faith, if any of faith, to give the hand that created us all a pass on this, you need to know that, you need to know I pay no attention to scripture quoted to me, you need to know that I have stood alone in fields lit only by the light of the universe and challenged it, and who made it, to a fight.

I have shouted into the night, show me what you’ve got.

I have knelt at the altar, and said show me what you got.

You give me a drum and I’ll bang it for you, and at you.  Me and the above, we go round and round.

Know that.

Now know this too, I believe in miracles, I believe I’m standing and shouting in heaven.

You may have to go deep in your faith to understand that dichotomy, but I also believe it is how faith should be.

If there is in fact a God I don’t think he or she minds that we stand in a field and yell, in fact I think that’s what God wants.

Because the answer, of course, is the field we stand in.

The only field, in the universe.

I’ve come to learn this, that the only answer to my shouts is…a gift.

The gift, of Life.

“…I am a poor boy too…”

I am a Cancer Survivor.

As are millions of us out there, Cancer Survivors. 

I got a disease where millions of dollars are spent on research, thousands of brilliant people are working on a cure, it is at the top of the list of the diseases to be wiped off this planet.

And I have no doubt someday it will be.

To cure disease you need two things, the smartest people on the planet attacking it…and a boatload of cash.

I thank God for the smartest, I yell at God about the money part.

Let’s be honest, money saved my life, research money.

The investment of a lot of dollars is paying off by saving a lot of people.

In the field I shout not for the many, the field shouts are for the few.

I shout not for myself.

I shout for Grant.

I shout for those who bear the word…”rare.”

“…I have no gift to bring…”

Grant is a 4-year-old twin, his sister, Vivian, does not have the disease.

I met his father, Allen, briefly at the Bassmaster Classic in Shreveport. Allen was the Conservation Director for the Illinois B.A.S.S. Nation but had to give it up once Grant’s diagnosis was made and the disease started to affect the 4-year-old.

“Speech and mobility is…”  Allen never finished one sentence about his son and the disease. I know if it was me and one of my kids, I couldn’t even begin a sentence.

“I don’t sleep much anymore db, don’t eat much, fishing, I wish, you know Grant…”

This photo explains what Allen tried to tell me.