I used to play the waiting game on things that I thought were important. In high school I would stare at the back of the heads of the most recent object of my affection and wait to see if they noticed me. In college, I learned to ration food. It wasn't that I was too poor, or had an eating disorder. It was just that if I waited long enough, my roommates would probably order pizza or grill something that was better than the Top Ramen and hot dogs I had in the pantry. Heck, my whole life I have been waiting for my favorite baseball team to field a team capable of winning a World Series - mercilessly checking box scores while detached overseas and reading countless articles about baseball players that could improve their lot.
Waiting on the results of Mal's scans has turned into the ultimate exercise in patience that I can imagine. During her initial scans, doctors noticed a spot on her spine that worried them. In a normal child, they would assume it was a couple of inflamed blood vessels. For a child who just had a brain tumor removed, it is a red flag. Additionally, Mal needed a CSF screening to test for cancer cells in her spinal fluid; a scan that is par for the course in the treatment of children with ependymomas. However, we had to wait until ten days after her ventriculostomy tube was removed to get the scans. Ten days came and passed, and Mal caught a cold. Her tests were delayed.
To pass the time while waiting for Mal's scans over the weekend, Rachel and I tried numerous pursuits to varying degrees of success. We broke down the cribs and moved the twins into "big kid beds" in their own separate rooms. Mostly, we did this to prepare for radiation, when we will have one sick kid and one well kid. Micah didn't particularly want to move into his own room, but in Rachel's words, "he sucked it up." Both kids have done exceptionally well in their own beds, so that only took about four hours of time.
Rach and I also attempted to watch a movie for the first time in ages. We had cocktails. We hung Christmas decorations. We took my car to the shop. Twice. We did Elf on the Shelf with the kids (who named the Elf "Bumble Fred Buster," which is Italian for "We refuse to agree on anything"). We gave the kids hot cocoa for the first time. All of these things helped pass the time, but did little to diminish the agony of watching every second tick off the clock.
Finally the waiting ended and Mal got her scans today. She hated going back to the hospital, but didn't really lose her composure until she saw the hospital bed. She refused to climb into it until she was unconscious. Mal's tests were performed, but in the ultimate tragi-comedy that is life, the one result we could have gotten today (MRI) was not revealed to us because the people who read the MRIs had all gone home for the day by the time Mal's tests were complete. We are still playing The Waiting Game. We should hear back tomorrow on that one, and then another 24 to 48 hours after that get the results of the CSF test. In what we can only hope is not a preview of the tempest to come, Mal had a forty minute marathon fit, complete with kicking, screaming, punching and tearing off of bandages while coming out from under anesthesia.
In the Waiting Game, as in the game of life, patience is a virtue. Patience may be hard to come by, but good things come to those who wait. I never went dateless to a high school dance. Casey and Ryan were always game for grilling or ordering pizza. The Cubs will eventually win. Mal's scans will come in, and regardless of whether or not they are in our favor, we will be alright. See, I forgot to mention only rule of The Waiting Game: Don't let life pass you by. That's the secret to this game, because it's the only way you'll win. Because even if you get what you've been waiting for all along, if you concentrate on only waiting, you will have missed out on a lot of really cool stuff. So even as brutal as it has been, I'm glad to have played The Waiting Game this weekend.
waiting is torturous. please know we are waiting with you... from jacksonville, but waiting no less. so wishing we were there to distract y'all, even for a moment. we love y'all so much.
ReplyDeleteThank you for sharing this moving post. Please know you are in the thoughts, hearts and prayers of many. (Friend of My Bottle's Up)
ReplyDeleteGo Cubbies! Go Mal!
ReplyDeleteThey look so cute all snuggled in their beds, with visions of Honker and Elmo dancing in their heads. You are amazing, making the huge effort to put some fun into daily life for Mal and Micah, and finding an occasional moment for each other. Waiting with you, praying for you, watching the clock tick.
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