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.
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.)
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.
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.
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.
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 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
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.
Enjoy the moments.
James fell asleep like this, in the middle of the afternoon. Chin resting on the car door. Snoring away.
New school. New teachers. New routine. James needs time adjusting to “new”.
And it turns out, so might I.
Whether it’s a new house, new job, new government, new relationship – there’s an adjustment time. A period of a few days, or weeks or maybe even months where you feel slightly out of sorts and possibly crunchy.
For example; I was in Publix the other day and the woman in my aisle couldn’t figure out if she wanted to be on the left side or the right side and kept swerving like she was drunk and every time I went left to pass her, she went left and so on and so on and all I wanted to do was ram my cart into her backside! (And yes, I am well aware that my current menopausal situation may be contributing to this hostel state of mind.)
What to do in those times? The only thing that I’ve found that works is to fall back on the things that make you feel good and grounded –
(Maybe not exactly in that order.) And of course – naps! James apparently understands the importance of naps.
All week we’ve been saying to James, “This is the new routine.” On the drive to school we ask, “James, where we are going?” He responds, “New School!”. And because he has a tendency to want to resist and sit in the parking lot, we then ask, “What do we do when we get there?” And he responds, “Walk.” “Yes James. New school. Walk.”
It will be natural to want to resist and sit. But keep walking. And before you know it, new becomes normal and you might just like people again. Or at least not want to run them over with a grocery cart.
7:40pm CDT!! LIVE from Douglas Corner in Nashville TN. LynnMarie will share a 9 minute story on her life and being “Different” as part of TenX9 Nashville. Log On! Xo
On Monday July 24th, I get to be a part of this really cool event. They pick 10 Nashville people to each tell one true story for 9 minutes. TenX9. It’s at Douglas Corner at 7:30. So… if your in town and need an excuse to get out – come! The topic for this round is “Different” which is of course why they are letting the accordion player speak. Hehe. I’ll actually be sharing a story about James! xo
I went on a date.
Okay, perhaps I should back up a bit.
My life has changed.
Because I write about what’s happening in my daily life, it’s only natural and necessary for me to fill you in on a few other changes that are taking place. I hope you will continue to read as I share stories of where I’m at– at the moment.
I’ve heard women talk about it. Even read a bit about it. But for some reason I NEVER ever thought IT would happen to me!
(And for the male readers – stick with me – your wives or girlfriends are gonna be here one day, and this might provide a little insight!)
In just a matter of days I have gone from the occasional cozy-warm flush feeling to daily hot flashes, night sweats, sleepless nights, crazy dreams and hours spent crying over animal videos on Facebook. It’s not pretty. In fact, it’s downright ugly, as I’m sure those of you who have gone through it will attest too. And, I sincerely apologize to the hundreds of women in my lifetime who said something to me about their menopausal state and I shrugged you off like it was all in your head. I’m lining this right up with back pain and contractions. If you’ve never had it, you can’t even begin to understand it. So, I am sorry if I didn’t give you the empathy you deserved. Because God knows I need empathy!
“For you woman, I’ve got the following rights of passages; menstruation, labor and let’s top it all off, late in life when you’re tired and flabby, with a nice dose of menopause!”
So, as I mentioned, I went on a date.
Nor should they!
And yet, five minutes before I’m leaving on a date, I’m standing with my head in my freezer. The freezer is packed-full of James’ pancakes. Which I first think about eating, then I realize that they make great neck-coolers. I even contemplate stuffing a couple down my shirt for the drive.
Dating is a good learning tool for me right now. One of the first things I’ve
realized is that it feels good to get dressed up again. When you’re in a long-term marriage, or suffer from depression, it’s easy to not care so much about what you look like. Your sweats and yoga pants become your best friends and the ponytail is the way you ‘do your hair.’ The guy stops holding the door open for his wife and date night turns into popcorn and Netflix’s. (Which is not necessarily a bad date night, if you’re watching Bloodline and not still in your yoga pants.)
So, recently I was getting ready for a date. I’m standing in front of the mirror agonizing over two pair of earrings, trying to figure out which ones would make me look thinner, since I’m wearing clothes from the menopausal-chubby-bloated end of the closet. At that moment,
(Insert ten year’s worth of images of me sitting in my robe with no make-up on. Had he never seen me “done up”?) I imagined if he could speak, he might have continued, “You clean up good Bobby! I had no idea you had real clothes and real long blond hair.” I would have answered, “Yes James, mommy’s clothes are real.”
The date was lovely. He held open every door and took me for a great meal, which I could hardly eat because I was so nervous.
So much to learn! I ate a half-thawed pancake on my way home. He hasn’t called.
Thanks for all the prayers… the scattering of my brother’s ashes was more beautiful than I could have ever imagined!