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 this evening, 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 http://fundraising.stjude.org/site/TR?px=1293423&fr_id=3708&pg=personal 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.
Thank you for reminding me why we need advocates, and who, and what we are fighting for.
“We can continue to ignore these unsolved problems, or pay short shrift to them, but if we do, they will remain with us well into the new millennium. They will worsen and foster an environment for new problems, creating a burden for our children and grandchildren.”~ Tavis Smiley, Doing What’s Right; How to fight for what you believe-and make a difference
No, thank you Redeye.
There is great strength to be felt when you walk with one on either side of you who offer unconditional support. That’s what I think this means:
For whenever two or more of you are gathered in His name, there is Love.
Praying for Jacob and for all of our children. May we all open our eyes and see the world as they see it. Only then will we be open to making the changes needed to help all children be successful.
God Almighty instructs us to take care of the less fortune and that is why we all stand together. Prayers up for Jacob, his family and all of our children. Russ keep up the fight and we will be beside you fighting too!
If Jacob is being treated at the local St. Jude affiliate, he needs to keep an eye out for Mrs. Lois. She is an angel of a nurse who has a way with kids, especially boys.
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