It’s a decision Darryl and I make repeatedly: should we bring Calvin or not?
Will the noise make him startle? Is there a place to change him? Will we have time to do treatments when we get back? What meds will we need to bring? Are his lungs up to par? Is there a place to suction? Will he zone out and be lost in the noise of seizures and the crowd? Is it worth the effort? Is there room for his chair? Are there ramps or an elevator?
The van has made our lives a thousand times easier – we cannot even imagine taking him anywhere without it! But we still hesitate after running through the questions.
We decided to bring him with us on one of our family traditions: the annual play down at the Civic. Friends treated us to the Sound of Music about five years ago, and we’ve been back every year since for three hours of absolute joy. The kids talk about it all year, it is such a highlight. So far every time we’ve gone, Calvin’s had to stay home with a nurse (which left the kids very unimpressed and us just plain sad he wasn’t with us). This year we promised them we’d bring him along (for better or worse!) for the show “Annie”.
Before pushing “Purchase” on the tickets, I hesitated again. Tickets aren’t cheap and there was at least a 50% chance his lungs would be in too rough of shape to make it. The performances go long and we rarely keep Calvin out of the house for more than 3 or 4 hours at a time. Not because he doesn’t like it, but because his lungs needs a break. I bought the ticket, the kids approved and Darryl’s arched eyebrows told me he was just hoping for the best.
As soon as the kids were ready, they started up the van, cranked the heat and lowered the lift. Darryl and I were busy inside doing the last minute change, getting his feeding bag filled, making sure his suction machine was charged and ready, stocking up medical things he might need, packing his 9 pm meds, and then finally getting him into his chair and bundling him into his coat. Phew! The kids are amazing with the whole “load up Calvin” process. One grabs his chair and takes him down the ramp while Darryl and I grab all the remaining pieces (and children) inside before heading to the van.
Darryl usually loads him up into the van and locks his wheelchair into the tie-downs in the back while Noah or Evie goes around to the front and locks in the two front tie-downs. Once he’s belted and strapped in better than a roller coaster ride, we do one last head check and head out.
The night at the Civic was extra special this year because Calvin’s neuro-developmentist and her husband were in the play. Dr. Dodge has been such an instrument of mercy in our lives since Calvin was just a few months old. What fun to see her as an old apple seller and a head cook in the “Annie” play. It gave all of us a laugh. The night was wonderful and the kids were thrilled. Calvin was really excited although it didn’t seem like he could see anything. He was trying to sing along with all the songs but he’d start in just seconds after they would finish. So yes, he had a few solo parts 😉
But by the third time we’d taken Calvin out as quietly as we could through the exit door, Darryl looked at me exhausted. “I think we’re going to have Calvin come alternate years.” We grinned wryly as we sat out in the hallway again, repositioning, changing and clearing him. What a strange life we live! Thankfully our other kids are very used to us attending to Calvin’s needs and did just fine without us, even Violet.
We were able to take him in the last 20 minutes without incident and I think it made up for the whole busyness of the evening. At the very end of the performance, Annie and the entire cast sang the song “Tomorrow” one last time. Calvin about lifted off his seat as he sang along with his own version of the line: “Just thinking about tomorrow clears away the cobwebs and the sorrow.”
It was happy, beautiful and exhausting all in one. And his smile told me it was worth every bit of effort.