Wednesday with Cole … and Leon

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Ed Gabler, Grandfather/Bapa to 5-year-old Syngapian Cole, has kept a journal/second-person diary for each of his four grandchildren since before each was born. Most Wednesday entries include comments about Cole and siblings spending the afternoon at Bapa and Nonnie’s house. Ed shares with us a special entry written in Cole’s book from Wednesday, August 31.

Wednesday was a normal Wednesday. You had a really good day at school, even being patient when you didn’t get what you wanted. After a bit of a struggle getting buckled in the car, you were happy during the ride and became extremely excited when I took the exit to my house. (It amazes me every time that you love going to our house so much and that you recognize the exit!)

Once there, you played with your zoo toy and horseshoe – no tantrums again! (I’m glad you’re playing with some of your old favorite toys.) You only napped for a little over an hour but lay in bed until 3:00 without complaint. After Nonnie and Jade left to pick up Graham from school, you and I went for a stroll, like almost every other Wednesday. Yep, it seemed like a normal Wednesday, but it wasn’t normal at all.

This was the first day I spent with you since I learned of Leon’s death.

Leon was a 6-year-old Syngapian, like you. A few days ago in the very early morning, Leon’s dad took him in his stroller for a walk near their house. Someone hit Leon’s dad over the head with a bottle, knocking him unconscious, leaving Leon alone for a very long time. Leon got out of the stroller and wandered off. There was a river nearby.

Leon’s body was found later that morning downstream. He had drowned.

Even before today when I’ve been alone with you, I’ve wondered … what if a car sideswiped me … what if I had a heart attack … what if a dog rushed us … what about a coyote … what if I crashed the car on the way home from school … what if I fell and couldn’t get up … what if …? So many possibilities beyond my control crossed my mind. The tragic circumstance of Leon’s death added to that weight today as we strolled, as I sang Tom Chapin songs to you, as I thought the unimaginable.

We always walk around the block just once, but not today. You wanted to keep walking, so we went around three times. After the first loop, I took you out of the stroller, and you ran to the backyard. The back door was locked, of course, so we returned to the front. Instead of heading inside, you walked to the stroller and raised your arms to be put back in.

After the second loop, I unbuckled you, but you immediately grabbed my hands and lowered them onto the buckle. I got the hint, so we walked another loop. Back home once again, I tried to get you to go inside, but even the bribe of your iPad wouldn’t get you in the door. You grabbed the door frame, screamed, stuck out your leg to avoid going inside. I gave in, put you back in the stroller, gave you your iPad, and we sat together out front, calm again.

I sometimes try to push you to do things I know you don’t want to do, but it’s only to test those boundaries, see how much you don’t want to do something. This is my feeble attempt at expanding your experiences, getting you to do something different, trying to teach you to control your temper.

It rarely works, but I usually know when it’s time to give in and not push any more. So I sat there, giving you some snacks, watching you enjoy the cars passing by, Moana then Leap playing on your iPad, then the Bubbles game. You were so happy. Your complaining and struggling – all forgotten and forgiven.

I know you can’t help it. You know of no other way to express your feelings. You can’t talk, so this is your form of communication. I understand that. For now, you can have your iPad, sit where you want, watch what you want, eat what you want (within reason, of course!).

(By the way, thank you for forgiving me, as you always do, for trying to make you go inside.)

I enjoyed our time together today without reservation, without any regret, without any exception. I will enjoy every moment we share until the day I die and will try to be there for you, Mom and Dad, Graham and Jade, to help support your special, rare life.

I thought of all this, I thought about our walk, I thought of Leon and his family.

Raising a Rare Child has so many challenges for parents and caregivers. They/we have to think of so many things that don’t concern parents of “normal” children, that I never thought about while raising your mom and your aunts. You know this even if you don’t understand it.

You know we have special locks on the doors to keep you in, because you test them all. You’re five years old now, and we can’t open the bottom sections of windows, have to watch you in the loft to make sure you don’t climb on the railing and fall to the first floor, have to follow you when Jade is near to make sure you don’t shut a door on her hand. We have to lock drawers, cabinets, toilets, closets. We do all of these things because we love you unconditionally and we would move heaven and earth to make you happy and safe.

All Rare parents and grandparents I know would do anything for their children. I’m sure Leon’s family most certainly did too.

Then I wondered about Leon’s grandma and grandpa. Did they take him for walks like we do? Did he sing to Leon? What songs? Did she tickle his legs like Nonnie does to you? Did Leon squeal with delight as much as you do? Did his grandpa play piggies with his tootsies? Pick him up from school? Did Leon lick their faces all the time like you do to us? Did they pretend to hate it as much as we pretend to? Did they love him as much as we love you? Undoubtedly so.

I thought about a lot today, more so than usual, so yeah — today was definitely not a normal Wednesday. Perhaps it’s a new normal, because I have a feeling that you and I will never walk alone again. Leon will be there with us, reminding me to hold precious every single moment.

Thank you for today, Coley. Thank you for every day. Love you, Little Man!

And thank you, Leon, for joining me today on my Wednesday with Cole. Until next week….