My Boring
I have to laugh when I think about what I define as boring. What I consider boring, ordinary and mundane today, had me in a tailspin not too many years ago:
“What do you mean I have to take this plastic tube and put it in that hole in his neck!”
“You mean I have to suck the snot out of his lungs and collect it in that container!”
“What the hell am I supposed to do when his oxygen saturations plummet to 80 and he’s turning a lovely shade of gray?”
“How am I supposed to get that machine from point A to point B?”
“He’s not legally blind, he can see!”
“You’re not turning up those ventilator settings are you?”
“Help, the g-tube fell out and stuff is gushing out of that hole in his stomach and going everywhere!”
“Are you kidding me?”
Today I can change out a trach; replace a Mic-Key button; suction snot ‘til the cows come home (and empty that disgusting container); trouble shoot a ventilator; bag my kid and hook up the oxygen with my eyes closed; load Jack and his portable PICU in the car in 20 minutes tops and get anywhere we need to go (including cross country); and recognize that those amazing eyes see more than I ever will. No kidding.
It just goes to prove that we humans can adapt to almost anything as long as we have consistency. What created chaos in my life just a few years ago has become my normal. God knows I fought making this my normal for a long time and part of me hates to acknowledge that this is my status quo. But, when you are rounding the corner on ten years of this way of life … you don’t have to hit me over the head with a ventilator for me to get that … this … is … IT.
I’m okay with the status quo because I really don’t need any added chaos to take IT up to the next level. I’m content right here … lying next to Jack … holding his hand … and listening to Raffi (and that darn ventilator!)
9 comments:
It's incredible when you think back to what used to freak you out and find it's become as commonplace as changing your socks! lol. I remember John and I fighting tooth and nail against getting a g-tube for Sam, but we are glad we did now, because he is finally the same size as a regular kid his age. Normal - and boring - yep, I'll live with that.
((((HUGS))))
Juliex
I am relate a lot too. Will had the IV Nutrition line for 6 months after he was trached, and we thought we'd never be able to do that. My SIL who is a social worker always reminds me that not every one can do it, sadly, which keeps her a job. So take a bit of credit once in a while, even when our "normal" is not what we expected.
- betty
Boring is not so bad. I'm proud that we have all gotten to the point where we can handle our own particular kind of boring. It's not what we want. It's just what we do. I hope Jack has a great week!
Kristy
Hey Ann, Im glad you are having boring! I read a lot but rarely leave a message :) I would LOVE some boredom right now, we are battling fear of the toilet. Count your blessings. Deb (cariaad)
Didn't you know, having a trach is the new "normal"?
:)
I love your humor. You can express so candidly yet eloquently the little quirks I'm starting to pick up on dealing with Gabe's trach/ventilator/g-tube care...
It has only been 5 months. I can't imagine 10 years. My Gosh!!! You deserve a standing ovation. The nobel peace prize. I only hope and pray I can make some sense of this god awful situation some day. I don't doubt one bit of it's been easy.
:)Rachel
When I see Jack's photos, I just want to lay down and snuggle with him too!
Like Elijah, he can't get away and we can kiss them a bazillion times on those squishy cheeks.
Though true, just not exactly the way we'd prefer it.
Love Kerry
Amen. You put into words what I've been thinking for the past 6 months. Like Rachel said I can't imagine 10 years...it's been 1 and I think I am so drained.... I like what you said about Jack's eyes btw....our thoughts exactly.
-Jen
You know, I really do look up to you. I'm rounding up almost 5 years with this ventilator and I swear if you had told me 5 years ago that I would still be here and still be doing this day in and day out, I wouldn't have believed you! Time has really flown by and like you, I do it all in my sleep now. Its amazing how we have adapted and can do just about anything!
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