Today’s post is a guest post from Shelley Tuozzo, the mother of a true hero. And if you ask me, she is a hero herself.
Shelley is both a member of our congregation and a friend. I wrote about her son Joey in this post. Since I wrote that post, Joey has been diagnosed with Costello Syndrome.
It has been a year of ups and downs (to say the least) for Shelley, her husband Joe, and little Joey. Joey recently turned 13-months-old. Last night he had a bit of a scare, so as Shelley waited and watched throughout the night, she wrote.
If you want to know how to be a hero’s mother, read on:
You’d think I would have learned my lesson by now. You see, I let myself believe we were on the upswing…that things were finally settling in…that I could stop holding my breath. And then tonight, while he was smiling and laughing, Joey’s blood sugar read 47. Joe didn’t believe the glucometer so he ran it again. 44. Crap. The crisis mode Shelley kicked in, following the checklist from our Endocrinologist – prepare a bolus feed of 20 ml, call the on-call Endo, and make sure we have the glucagon shot ready in case he crashes. He didn’t…or at least, he hasn’t. We’re in for a long night.
Then I got to thinking…I miss that Shelley – the telecom Shelley. The one who took everything in stride, who was ruled by logic and not emotion, and the one people would go to in a crisis to a) calm them and b) take care of the problem. Oh, that Shelley is still in there. And I still am pretty calm in a crisis and I still lead first with the logical side, methodically breaking down the big picture into small, solvable projects. It’s just that now I have MUCH less control of that emotional side.
I still have a “never let them see you cry” mentality and, with the exception of family, the Genetics counselor who gave me the Costello diagnosis, and my entire church who attended the service I spoke at, I’ve stuck to that. But even those glimpses still make me uncomfortable. Ultimately…because the problem always revolves, in one way or another, around my son…there’s more emotion there than I have ever felt in my life. And it’s funny I mention a lack of control…because I’ve realized how little I, in fact, have. Yes, the girl who could research, document, create a process, measure, and evaluate just about anything, now realizes she can’t control the world around her. And it sucks.
You know what else sucks? That my little boy has had so much to go through in his short little life. That so many pages in his baby book remain blank…he hasn’t rolled, he hasn’t sit up by himself, he hasn’t crawled, he isn’t walking, he isn’t talking. That he’ll likely never go to college, never leave home, never marry. I’ll never be a Grandmother. That he has to be scanned every three months to make sure there isn’t cancer growing inside of him. That I have met other mothers with Costello children who are watching their child suffer through cancer and I cry tears for them.
But then I stop myself and feel ashamed. You see, thinking like that only results in anger or tears and it’s a VERY selfish view. It implies that somehow we’re being punished by having to deal with Joey’s conditions. Yes, they all suck. But at the same time, he has brought us more blessing and more joy and more smiles than have been in our lives combined. I couldn’t be more proud of him, how hard he works at learning new things, and how far he has come over the course of a year.
The boy learns something new every week. And I think having him, with all his issues, makes us more appreciative as parents of what he DOES do and what he HAS learned. I spend more time praising him for things other parents might think are of no importance. I don’t want to miss a second with him because he might astonish me with his will and determination. And that smile…it will make you melt.
You know what’s great? That my little boy has so much more life in front of him to make up for the early suckiness. And that he WILL fill that baby book with dates…eventually. And that Joe & I will have more time to spend with him than the average parent. And that I’ll be the proudest MOTHER ever…and that’s enough. And that we have more opportunities to have serious conversations with God, asking him to take care of our little boy as he’s scanned and as we wait for results. And that I’ve met so many wonderful people who I otherwise would not have met if not for our very special child.
And now it’s morning. We’ve made it through the nighttime feed with perfectly wonderful blood sugar results. I don’t know that I would have expected anything less than this from Joey – to be the man of mystery. We don’t yet know why it happened, or whether it will happen again. If only I could control that.
I don’t usually do it, but maybe I should make some New Year’s resolutions (even if it is a tad late). I resolve to fight every instinct I have to plan everything out and instead take it one day at a time. I resolve to stop mourning things that were never mine in the first place and to appreciate every “little” thing that I do have. I resolve to make sure that I don’t take people for granted and that I have them know how much they mean to me. And I resolve to determine exactly how many kisses a 13 month old boy can stand in one day.
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If Shelley’s not a hero of courage, faith, and resolve, I don’t know who is.
Is there someone in your life who has shown these qualities?
