If you want to instantly find your way to Ben’s heart, bring him a train. My friend Jen must have known this because she came to my house last week with one in hand. “It’s a breakdown train,” she said, in her bubbly way… both of us noting the double meaning as the words spilled out of her mouth.
We had originally planned to go on a walk. I desperately needed some time to myself, some time to finally move my body after weeks of illness (mine and Ben’s) Not to mention packing up an entire house for our move last Sunday… I needed some air.
And then I got the call from the school, the third call that week. Ben has been falling. A lot. Like fall-out-of-his-chair-for-no-apparent-reason-falling. By noon it had happened eight times that day. I called my friend to cancel and to ask her to meet me at my house so I wouldn’t have to be alone. As I said to her on the phone, Please come over because I’m about to lose my sh*t and I’m behind the wheel. “Don’t lose your shit yet!” she warned.
So she arrived with the train in hand and explained to Ben that this is the train that comes in and helps the other train back to the station when it breaks down.
It turns out these falls he was having were actually atonic seizures and they happened up to eight times a day for about a week. (They mercifully stopped last Friday) They are not harmful in and of themselves but his risk for a secondary injury from a fall is high. We had to send him to school with a bicycle helmet which he was delighted to wear. Thank god for three year olds… all of his classmates are jealous that he gets to wear a helmet and they don’t.
A chorus of:
Why does he get to wear it? It’s my turn!
He has to share!
Why isn’t he sharing?!!
This is what the teachers were hearing all day long. They have now instituted Helmet Day on Tuesday in Ben’s honor.
We are in the midst of EEG’s, MRI’s and second opinions, and trying not to panic. We don’t have a definitive diagnosis yet, but we are culling our resources and trying to make choices with the most grace and presence we possibly can.
Smack in the middle of neurology appointments was our move last weekend. (My Mondo Beyondo dream of finding a new home in our neighborhood came true) Help came from so many places. A friend flew in from Los Angeles, another drove from Santa Cruz to pack our things, others watched Ben while we furiously shuttled boxes to and fro. Not to mention the psychic support from people who love us and love Ben.
Our breakdown train is long and hearty. It comes bearing gifts of all kinds–laughter and joy, homemade lentil soup and squash risotto, able hands ready to dive in, generosity beyond beyond, and fierce love at the bottom of all of it. I imagine it like Ben would: a circus train full of animals of all kinds, carnival music and bright colors, ready to swoop in and put us on the track again.
I had a great conversation with Ben this morning that I am sure came from spirit itself.
Ben: Did you put oatmeal in my lunch?
Ben: I don’t like oatmeal.
Me: No oatmeal in your lunch.
Ben: I don’t like pasta too.
Me: I didn’t put that in either.
Ben: I don’t like cheese mama.
Me: Ben, I promise, you will be so happy when you get to school and see what’s in your lunch.
Ben: (pause) But I’m happy now mama! (and then he shouted for extra emphasis) I’m here! I’m happy now!
Straight from the Buddha’s mouth and what I have to keep reminding myself when I get scared about what the future holds: He’s here. He’s happy now.