I woke up this morning a bit anxious and worried about the event tonight. I have felt incredibly stretched these last few weeks, like I’m running in too many directions and I feel unprepared. I reached out to a friend who tried to calm my fears and then said, ”just do another Facebook post, I’m sure it’ll be great.” My initial thought was, “What else would I say to promote this event?”
I took James to my happy place, the trails at Percy Warner Park. Half way up the first hill, with Michael Stanley pumping in my ears, and James singing loudly and passionately to Little Einstein’s in Chinese, I found myself exhausted and out of breath. The mean voices told me how out of shape I am at the moment and I should turn around. But we pressed on.
As I rounded the bend, I could see them from afar. I didn’t know them, but immediately I did. Without hesitation, we stopped. “This is Adam,” a woman wearing a Predators jersey said. “This is James,” I replied. Simultaneously we both looked down at our children and asked them to acknowledge each other. James and Adam barely lifted their eyes off of their IPad’s and mumbled hello. As we started to continue walking, the father, also wearing a Preds jersey says, “I guess we both had the same idea.” I knew that what he meant was that we both put our special needs kids in their adult size strollers to try to take advantage of this beautiful fall day. But as I huffed and puffed up the rest of the hill, I thought more deeply about his words.
We both had the same idea about a lot of things I’m sure. Thoughts that involved a typical child and walks that didn’t include over-sized strollers and electronics. But we also probably have the same idea about how to uniquely love our kids, and figure out what makes them happy. It’s not always easy, but we figure it out. We figure out how to take advantage of this beautiful day.
As my playlist shuffled from Michael Stanley, to Vince Gill, to polkas, I thought about Adam and his parents. Everything about their day screamed, “I am not covered by insurance.” The stroller Adam road in, his headphones, his iPad, his orthotics…none of it covered. I shook my head and realized that this was not at all a chance meeting. That it was perfectly orchestrated by God and the universe to remind me (and you) that that’s exactly what Because of James is hoping to do. Starting tonight!
Come paint a pumpkin, or drink some pumpkin spice, or learn how to polka!
5-10pm. The Old School. 5022 Old Hydes Ferry Pike. Ashland City, TN. If you can’t join us, please visit becauseofjames.org and join the mailing list!
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.