“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.
Grant was a normal boy, then, then…. “After seeing a bunch of specialists we got the results, it was, my wife got the results first, on the paper was printed Batten Disease, she called me up and told me…”
I’m sitting in my office at home in Connecticut, it is snowing a perfect Connecticut Currier and Ives White Christmas. Allen is on the phone from Chicago, downstairs Barb is humming Christmas songs as she bakes Christmas cookies, in our bedroom sits the kids’ presents waiting to be wrapped. I hear what he says and my mind shouts, how is it possible, joy in Connecticut, grief in Illinois as Allen says:
“…when she told me I told Vanessa I would look it up on Google while we were on the phone…”
And then I write this down exactly as Allen told me:
“…she told me db, she told me, don’t, don’t look it up on Google, don’t, and I knew then…it was bad.”
“…shall I play for you…”
“Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.”
~ Margaret Mead
On my desk sits photos of my children as they grew up through the years, Jimmy and Ashley at 8, at 12, at 16, normal dad desk stuff. Allen is talking but to be honest I’m not listening much, I’m watching the progression of my kids’ photos and know, know, there will not be that on Allen’s desk.
Allen talks of a research trial study in Columbus, Ohio, that they are trying to get Grant to be a part of, but it doesn’t look like it will work out, he tells me of the cost, experimental treatment always found down in the small print of what an insurance company won’t pay for, he tells me the trial involves brain surgery, I write that down and this word, “hope,” mine not Allen’s word.
Vanessa I see wrote this: “First takes their childhood, then takes the child.” I ask Allen if those were her words or something she read, he tells me he didn’t know, never asked.
Then he tells me this, “You know db I think God knows what is coming a person’s way and puts other people in the path to help, I think he placed you and me in that quick meeting at the Classic just for that reason.”
I believe that too, but I don’t for a moment think it has anything to do with me.
I do believe though it has everything to do with you.
You.
Your drum to bang.
“…on my drum…”
“This is the message of Christmas: We are never alone.”
~Taylor Caldwell
There is a GoFundMe account to help the family (www.gofundme.com/rise-up-for-grant) and if you can any donation will be appreciated and used to help pay the enormous expenses that Allen and Vanessa face.
But this is what I told Allen that I wanted to tell you, “I want them to scroll to the bottom of the disease research chart.”
Help who you want but if you can scroll down and find those people trying to find a cure for the rare diseases, for those diseases you may never have even heard about, those way down on the list, need help too.
I have nothing to do with these people, did check them out some and they seem to be legit: https://rarediseases.org. They may help direct you to those who really need your help.
I’m not asking you to stop supporting the major diseases that we all hear about and help but if you can, match what you give the big guys to the little guys as well.
Suffering is suffering whether you suffer along with thousands or with just 500 or less.
This Christmas, bang your drum for the few.
“…I played my drum for him…”
“My idea of Christmas, whether old-fashioned or modern, is very simple: loving others.”
~Bob Hope
I will play my drum for those not heard.
I will play my drum for little Grant.
I will bang my drum loudly for all those who can’t.
That, is my job, you may take offense to the noise, but you will hear it, that is my job.
Bang your drum for those not heard.
Bang your drum for the few as well.
And that my friends is what the universe shouted back.
As I stood alone in the darkened field … bang your drum for all those like little Grant.
Bang it even louder, for the few.
“…me and my drum.”
Little Drummer Boy
Katherine Kennicott Davis
(Carol of the Drum 1941)
db
“Then the Grinch thought of something he hadn’t before! What if Christmas, he thought, doesn’t come from a store. What if Christmas…perhaps…means a little bit more!”
–Dr. Seuss,
How the Grinch Stole Christmas!
