When James was eight-years-old, I sat on the bathroom floor with three highly trained ABA therapists. Clad in trash bags that read, “Team James”, and surrounded by colorful gadgets and M&M’s and anything that might motivate him, I watched and cried as they worked to get James Potty-trained.
Did I mention he was eight? We were at our wits end and needed help.
And thankfully – it worked! But that weekend wasn’t free nor cheap. It cost us about $1,500. But, gratefully, it was covered by a grant from the financial assistance arm of The Grammy’s – MusiCares. (MusiCares also provided resources for James to receive speech therapy as well as dental sedation in order to get his teeth cleaned. And, a donation from another foundation, The Fiona Rose Murphy Charitable Trust, provided James with the now “infamous” IPad within days of his breaking.)
All of these situations made me aware of the daily needs that are not covered by insurance for special needs families, and I wanted to find a way to help.
Which is why, Because of James, A Foundation Providing Support for Special Needs Families, now exists. And this Saturday night is our very first event to raise awareness and funds!
The Old School Farm, just ten minutes outside of Nashville, as offered to have all the proceeds from their Fall Festival benefit The Because of James Foundation. If you haven’t heard about this place yet, it’s awesome. It’s a farm to table restaurant and music venue and they employ special needs adults to work on the farm. How cool is that?
I hope you will join us on Saturday. It’s supposed to be a beautiful day in Tennessee. From 5-7pm there will be lots of activities for the kids, pumpkin carvings etc., and then LynnMarie & The Nashville Polka Guys play from 7-10pm! (The 5-7pm festivities are free, but the suggested donation for the music part of the evening is $10, but not mandatory.) Your presence will be the most important part.
Being a part of The Grammy’s changed my life. Being a part of MusiCares changed my life…and James’!
And because of their example, I hope James and I can change the lives of many more.
Come celebrate with us!
Over the weekend I was listening to one of my favorite audio books, “What to Remember When Waking, The Disciplines of an everyday Life” by David Whyte. He tells this great story about a time he held his daughter in his arms. And in the moonlight, he watched her little palm open and close, as sometimes children’s palms do when they are falling asleep, and he noticed the lines in her hand.
He realized that in a way, those lines represented her future life and her future potential.
And that as well as he knew her in that moment, people in her future world might know her better than he ever did.
I feel the same way about James. I know as much as I can possibly know about him right now. What he likes to eat, how he sleeps, and what brings him joy. But the reality is, I will not be in his life forever. And I have to trust that the people who are with him when I’m gone, the friends he will have when he is forty or fifty, may know him better than I do.
There is such a great sadness in that thought, that it could easily make me spiral and bath myself in Tiramisu.
And I am aware that I am not alone in this fear, and that all parents with children probably feel the same way. But because James will likely not be able to care for himself completely, these future unknown life-helpers are on my mind and heart all the time.
We swam at a friend’s pool on Sunday. And watching James jump in the water never gets old. And that is the only way I stay away from the darkness. By knowing that in his future there will be a pool. And the ability to jump. Resulting in joy. This keeps me present and mostly away from sugar.
After I took this video, we snuggled on the patio furniture. He ate his pretzels and I stared at his palm. I ran my finger up and down his Palmar Crease.
And I said a prayer for the unknown life-givers, the yet-to-be-met friends, and for the person who will hold his hand when he is taking his last breath.
And I prayed that they will always take him to the pool, make sure he has Rold Gold (not Snyder’s) pretzels to eat, and mostly, to remind him how very much I loved him.
Last week was THAT week. The one where you don’t get enough sleep, you eat Ruffles for dinner and
hope the underwear you picked up from “the pile” is in fact clean.
But I made it through. Sometimes, you just have to close your eyes and run, and believe that you will eventually, get out of the storm. Which I did
James is adapting to the new crazy schedule as well, much to the love and support from The Village. Shout out to Catherine and Will & Colleen Mandell who have stepped up and become care-takers to both James and myself. (Oh, and house cleaners and grocery shoppers!) You are loved and appreciated. . , Thanks to the prayer warriors (Sara George & Sandy Ivey), I have felt every single one! And to my office mates Shaunna and Julie – I love life with you in our little 9×12.
It’s Tuesday. And already things better and more doable than last week.
The rain has stopped in Nashville, the ground is become hard again. It always does.
Enjoy the moments.