My little boy goes to school with some amazing kids. They’re cute, funny, vibrant, and astonishingly joyous little boys and girls. They’re honest and direct. And when they love you, they love you with the whole force of their will and their being.
One of those amazing kids is Jacob. Jacob is 9 years old, he’s on the autism spectrum, and he has a brain tumor.
He’s also part of one of the bravest families I know.
I had a conversation today with a friend who has a special needs child. He was telling me how difficult it is to know that people just don’t get it, and that every moment is a fight for your kids. It’s a fight in your home as you work out the best way to help your kids. It’s a fight in your work place as you struggle to balance the needs of your family with the needs of your career. It’s a fight to pay the bills. It’s a fight in the school system to ensure that the education your kids are receiving isn’t unfair and inappropriate. It’s a fight in your church as you struggle to explain why your child needs to play with an iPhone to distract him from the overwhelming sound of the pipe organ. Or why the stain glass windows really just needs to be licked.
It’s a fight, all the time, for understanding.
Yes, our lives are filled with struggles. They are filled with people who don’t get it. They are filled with people who want to take away the support that my child needs to acquire his education. They are filled with discrimination, harassment, bullying, and hate.
But that is not all. Thank god, thank us, that is not all
They are also filled with kids like my boy, whose laughter shakes the rafters. They are also filled with children who will hug a complete stranger just because she smiled and was accepted by the people he trusts. They are filled with kids who never lose the joy of discovery and bouncin’.
They are filled with friends, true friends, who even though they are going through similar struggles, are always there with a hug, a knowing smile, a strong shoulder, a beer, a tear-filled eye, and a scream of joy when your son finally says, “I love you, dad” for the first time.
This is what true happiness is. This is what true community is. This is what true church is. This is what true family is.
Accepting others, being accepted by others, and making our way through this life, together.
That’s what I’ve found in the autism community in Huntsville: acceptance, support, and love. In the space that we create for one another, I find that I don’t have to fight for a while.
I’ve found a community right where I already am.
Eighteen years ago last month, my father passed after a three-year struggle with cancer. He was 54.
In those all too brief years, he and I had many a fight. We were on opposite ends of the spectrum in many ways that did not matter, and we were inseparable in all the ways that did. He was a man who loved others, completely, unashamedly, and with all his strength. He believed in helping others. He believed in quietly sitting beside his friends listening to them work out the shit they found themselves in.
He believed in standing for those who could not stand for themselves.
He built community, church and family everywhere he went.
And I miss him.
But he would hate it if I allowed my loss to isolate me from building those things here. And so I don’t. Even though raising two special kids is hard some days, it has opened up whole new worlds of joy and family for me.
Jacob is a part of that family. And now he and his family need our help.
On Saturday, November 17th Jacob and his family will be walking in the St. Jude Give thanks. Walk. here in Huntsville at the Madison Square Mall. They are walking for Jacob and all the other amazing kids who are fighting against a shitty disease.
If you too would like to be a part of something bigger than yourself, something good, something hope-filled, something joyous, please consider making a donation to the Love for Jacob team. You may do so by visiting this site and making a donation.
We’re here to carry each other. When we do, our lives are filled with kids like Jacob who can brighten the world with their smile.
What: St. Jude’s Give thanks. Walk
When: Saturday, November 17
Where: Madison Square Mall
More Info: Registration starts at 6:45AM. Walk starts at 8:30AM
Dad, hubby and irritator of students and school boards alike, Russell Winn is committed to ensuring that the Huntsville City Schools provide access to the educational support system for every student. When he's not enforcing grammar rules or arguing the ethical minutia of Kant's deontology, he spends his time loving his kids, reading anything by Stephen King or Christopher Moore, and attempting to speak truth to power on behalf of special needs kids. You may follow his rants at www.geekpalaver.com or on twitter at @russwinn.