I was telling a friend yesterday about my year, “Yeah, it’s been a little rough, my one brother had a stroke, the other brother had a cranial brain surgery, the other brother passed away, I found out that I myself have a brain aneurism, (contrary to my post that said I had nothing to worry about), plus I went through a divorce and moved into a new (much smaller) place. But, hey, I’m still standing.”
Why is then is it that I could survive all that, but the moment your child does something as small as make a mess, it can bring me to my knees, cause a river of tears and put me to bed?
For those of you who may be reading a blog of mine for the first time, you should know that James is a ten-year-old happy little boy who has Down syndrome and Autism.
Every morning, on the way into school, James eats three pancakes, warmed in the microwave, on a paper towel. Not four, not two. No butter or syrup. And most days he eats them without incident. But occasionally, like today, he makes a mess.
And he does this by acting like a cow. Seriously, my son chews his cud.
He will stuff the pancake in his mouth, chew it, half way swallow it, and then regurgitate it back into his mouth. Really? I don’t know why he does this. Before I started writing this blog I placed a call to the Down syndrome clinic and the autism clinic hoping they could provide answers. Until they call back, I’ll keep writing.
I made it clear to James (so I thought) that if he made a mess with his pancakes he would not get to play with my iPhone, which is his most favorite thing to do. (You may be saying, “then just don’t give him the pancakes.” Which I know sounds like a great solution. But I would like you to be here tomorrow when he opens the door and there are no pancakes on the seat. There will be an eruption of emotion unlike I’m sure you’ve never experienced first-hand.)
James is quietly eating when I hear him say, “Moon!” I said, “No, that’s the sun buddy.” He loves the moon. And then, a few miles down the road, I hear gagging from the back seat.
I look and there is so much pancake shoved in the crevices of his sinus cavity, that his nose is now dripping with pancake snot.
Chewed pancake coming out of each nostril, which of course he tries to eat again. I am yelling, reaching back with a Wet One and trying not to swerve in order to catch it all. A half-box of Wet Ones later and it is over.
I walk James into school and he is covered in pancake. Pants, shirt, jacket, hair. I want to shout out to all the other parents, “I promise these are clean clothes and I truly did bath him last night.”
After the hand off to his aide, Ms. Bidini, I get in my car and sob all the way home. I’m mad.
I’m mad at God.
I’m mad at my inability to handle this. I’m mad that my brother had to die a horrible death. I’m mad that the holidays are approaching and I might not know how to handle it. I’m still mad that my mom had to die when she was only fifty-six, an age I’m quickly approaching.
And I mad that Ben & Jerry’s discontinued my favorite flavor of ice cream.
I round the bend on I-440 to see the moon. Still shining in the morning light. The sun is to my left, blinding the traffic and the moon is to my right. In between I see a billboard for St. Jude’s. An adorable bald little boy is fighting for his life. Then, at my freeway exit, there is a homeless family. Bundled up because today it’s cold.
I am sitting on my couch, in front of a fire. Waiting
for my new iPhone to ring bringing help to solve a pancake snot problem. Gratitude continues to heal.
Yeah, it’s a good day.
Like most everyone on Facebook, I have spent the last few days reading posts, post-election. I have never been more relieved that I call myself “the least political person on the planet”.
Change is hard. I’ve been saying that all year. And it might take months and months for all that has happened to me this year (and what is happening in our country) to play itself out and make sense. Yesterday, I told a friend who is struggling,
“keep in mind, this is a marathon not a sprint.”
And so we keep running, or walking, or limping if that’s all you can do, but you keep going. And you keep focused on the things you CAN control, like your attitude, your smile and how much sugar you eat. We get out of bed and instead of being crabby and glued to the television, you go for a walk in the woods, or call an old friend who needs to know you care.
James of course could care less who is president, so he may actually beat me as the “least political person on the planet.”
All he really cares about is that he gets to watch Dora on his IPad, eat pancakes for dinner and take his sock monkey to a restaurant. And trust me, these are truly important things. So it’s my job to make sure I can give him that. I make sure the iPad is charged. I make sure Publix keeps his brand of pancakes stocked. And we visit California Pizza Kitchen at least once a week – so he can see all his friends that work there. I do what I can.
I spent the last few weeks producing the CMA Red Carpet Show for DirecTV. It was crazy and tiring and a blast…. like most TV gigs. I think someone should produce a behind the scenes documentary of what is going on when celebrities are walking down a red carpet, looking beautiful and gorgeous and calm, because there are at least twenty people in a TV truck right outside who look like they just survived a tornado, or the 2016 election. Kind of the same. Pure chaos at best.
But the election is over. And the TV gig is over.
I was putting James to bed one night when the moon lit up his tiny room and filled it with light, making it difficult for him to fall asleep. (No time to put curtains up yet!) We said our prayers. “Jesus, thank you for a fun day. God bless Mommy, Daddy, Grandma, Racheal, Uncle Lenny, Auntie Kiki, and then whomever James happened to see that day… Auntie Sandy, Dee-dee, Chris etc.” BAY-MEN. (Amen). And then James said, “Sing?”. I asked, “You want mommy to sing? What do you want to sing?” “Farm” he said. “Okay, let’s sing. Old McDonald had a farm, E-I-E-I-O. And on that farm he had a….” And I wait and James says, “Pig.” Of course there’s a pig on the farm. And a horse and a cow and a kick-in (chicken).
As we sang, I found some peace. Peace about the election and peace about crazy TV gigs. In James’ mind, no matter who is president, Old McDonald will still have a farm, and there will always be a pig on that farm.
My spirit was calmed by this simplicity, and reminded that God asks us to “have
To KNOW and TRUST that the way things are happening is the way they are supposed to be happening and that we are not in control – HE is! And most importantly, that our job is to stay present in this day and keep our hands and minds and hearts busy doing what we can control. Bake someone cookies. Go for a walk. Meditate. Show love
Oh, and James would like you to know that thanking God for the people in your life is that last thing you should do at the end of the hardest of days. Try it.
Gratitude can kick angers ass any day or night!
For months now people have been asking me, “How is James handling the divorce?” And I would respond, “I think he’s doing really great, but I’m not sure if I would even know.” Well… this morning, I know. James had a total and complete melt do
wn going into school. Which means I had a total and complete melt down going into school
My heart broke for him. And me. And I did the only thing that I knew would help, (besides the obvious of eating a dozen of donuts) I reached out to a friend. And they texted me this,
So sorry. Change is hard.
I have tried my best to explain the new condo and the new schedule and the new bedroom. I have tried to make sure that all his Elmo’s were nearby and that his iPad was always fully charged. But the bottom line is my friends words are correct… change is hard, for everybody.
I know that he will adjust in time. And he will get used to all the new things. And so will I. But today is one of those icky days. Where you just wish things weren’t as they are. You just wish you were in your old bed, your old house, surrounded by the familiar. When you are drawn out of your comfort zone, God and the universe are asking you to trust and believe like you never have before.
This week I got to speak for Regions Bank and their United Way Kick-off Drive. I got to share my story of survival. I met other people who are dealing with some really tough stuff. And each time I talk about the journey, I am reminded that is in fact… a journey.
Today is just one day. It is not the end. We keep walking, left foot, right foot breath.
I found this quote by Mary Tyler Moore.
“Take chances, make mistakes. That’s how you grow. Pain nourishes your courage. You have to fail in order to practice being brave.”
Pain nourishes your courage. I love that thought. I love the thought that what I am feeling right now is actually nourishing me in a strange way.
My prayer today for myself and for James and for you (if you find yourself in the midst of change), is that with every ache we remember that we really are getting stronger.
Have a brave day!