At one point, not that long ago, I didn’t think I, or we, would get to a place where I could talk about the bus without crying.
Here’s the thing about having a child with Down syndrome that is the underlying theme to every single little thing you’ll ever experience: Sometimes, nothing makes sense. And the things that DID make sense yesterday might not make sense tomorrow. The things that are easy victories today were horrible nightmares the day before.
For some reason, the bus has *never* been particularly easy for Zack. Granted, his past two schools have been 25-plus minute rides from home (sometimes, much longer). And, he’s strapped into a five-point seat for his own safety (otherwise, he’ll wander, throw things and cause some danger for himself and others).
Whatever the reason, aside from the first week of school, getting Z-Man onto the bus without a) him running away, b)me breaking down into tears or c)my back aching from him pushing back against me on the bus steps seemed impossible. Once that novelty wore off, it became pretty rough.
I can handle a lot on our journey of parenthood, but I felt so constantly defeated — mentally, emotionally and physically — by 830am EVERY single weekday morning. A lot of things contributed to this spiraling out of control in my mind at least — Addie was watching, sometimes scared or concerned; other parents and neighbors were there, as were other kids on Addie’s bus. One day, a well-meaning boy asked if there was something “different” about Zack. I told him we were all a little different while I watched the wheels turn in Addie’s mind.
I have to say this: Some of our neighbors were INCREDIBLE — even in the first few tough days and weeks. One older boy stopped a football game in the cul-de-sac to throw the ball gently to Zack a couple of times and complimented him on what a good catch it was. His dad let Zack pet the family’s dog a few mornings and even let Zack “walk” the dog to his bus to try to lure him up those stairs easier. Those moments made this Momma heart so happy. It gave me strength.
Zack’s teacher created little bus “passes” for him — if he got on the bus nicely, he could play his preferred activity first thing at school as a reward. That helped for a couple of weeks and then it went downhill again.
The monitor on the bus even got stickers and a plush toy cow for Zack to play with on the bus once he got on it safely.
I started at about 730 every morning reminding Zack of the games he’d get to play at school if he was good getting on the bus and telling him how proud I would be if he would listen to me and the bus driver. And still, nearly every day, some major fiasco kept the bus stalled in the street, holding up traffic while antsy kids from Addie’s bus watched curiously and as I blinked back tears of frustration and sadness.
One day, a woman in a minivan caught just behind Zack’s bus actually got out of her car, stood in the middle of the road and held her hands up in the air in annoyance. I was ready to go all Jersey on her and take her down in a fury of hair-pulling all while demanding she grown a heart and open her mind to other people’s stories and struggles. I didn’t get arrested that day, and, in some twisted way, it almost brought a little humor to the situation.
And now, for the past few weeks, it’s been easier again.
Not every day is perfect, but so many days are easy.
We’ve waited just a couple of minutes longer before walking down to the bus stop. Most days, the bus pulls up just as we reach the corner a few houses down. And I don’t give any long speech or exhausted plea to Z-Man every morning. I give him a hug and squeeze his hand and we skip on down the road talking about what he might do that day. His monitor now steps off the bus and Zack leads the way back up the stairs like a mighty kind, all with a smile on his face.
The other day, his bus was running late and Zack was stuck hanging out with me (insert: death grip on boy’s hand by nervous mom) all through waiting for Addie’s bus and having to watch all the kids on her bus play and wait and march up the stairs. But he was Mr. Cool — he gave adoring hugs to a neighbor’s baby son, petted that lovable aforementioned dog and walked with mom, marching back and forth up and down the road together before we heard his bus come up behind us. Everything was stacked against us that day. I felt like I was holding my breath. “That’s a pretty awesome kid there,” the bus driver yelled out of the window, stopping the bus right there in between our house and the bus stop. “Should we take him to school?” And Zack let go of my hand and I instantly panicked. But he yelled, “Yep!” back to the bus driver with a huge grin, waved goodbye to me and marched across the street and onto the steps. It was easy. When it shouldn’t have been. When I was expecting the worst.
And that’s the thing that sums up our journey with Zack and our experience with Down syndrome: Don’t plan for anything. Don’t not plan, either. Instead, do your best. Give yourself grace. Believe in him and believe in tomorrow being a little better and a little easier.
I’m not saying we’ll never struggle at 8:20am with a big yellow school bus, an ornery seven-year-old and four large looming steps that decide the feeling of my whole day. I’m just saying I know that it might happen. And he might also just smile and wave and climb on up.
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You are all amazing!!! I miss you all so much!!!! Hooray Zack!!!!! And hooray Mom! You are each so incredibly lucky to have each other in your lives!!! 💙💙💙💙
How happy you must feel on those days when it is easy. May there be more easy then hard in your up and coming days. Regardless in the end…that smile…it must melt it all away!! Hugs!!