This morning, I'm feeling a little pissed.
I'm pissed that Laura and I are so easily launched into terror by things that normal parents have the luxury of shrugging off. Like a few barky coughs in the middle of the night.
Normal parents have not had the the mask ripped off and seen the bone and gristle and red shiny pulsing muscle that lies just beneath the surface of life's rosy cheeks. They don't hear a small boy cough in the middle of the night and start to shiver, terrified of what it might mean. Don't flash to lab coats and thin sheets and bright florescent lights. Don't mentally list what to pack and for how many days and how quickly it can be done while lying in bed trying to slow a racing heart and dreading the next noise out of their child.
I try so hard to sink fully into the plodding rhythm of our full and happy life. I look forward to our dates with friends and waving goodbye to Simon as he rides away on the school bus and doing my yoga class in the mornings. I love our lazy evenings spent lying in the hammock, playing "surprise!" and reading "Hoppy Passover" again and again. Walking to Arizmendi on the weekends to charm scone-munching early-risers. Watching Simon's gorgeous little body romp around the backyard naked when it's warm enough to have some naked time. Blowing bubbles in the bathtub before bed. Simon's closed-eye smile as he fakes sleep when we wake him up in the mornings to go to school.
I do NOT appreciate being reminded that that can all be ripped away from us, even for a week like last winter, by a few goddamn coughs that could put us back in the hospital.
Give me some goddamn space, you dumb-ass disease.
Seriously.
I get it. I know you're there. Message received.
Just give us some frickin' SPACE to be normal parents without terror poking it's sleek, beady-eyed, needle-toothed head through the surface every time there's a little tremor.
Back. Off.
p.s. Simon seems fine this morning. Laura and I...a little rattled.
I'm pissed that Laura and I are so easily launched into terror by things that normal parents have the luxury of shrugging off. Like a few barky coughs in the middle of the night.
Normal parents have not had the the mask ripped off and seen the bone and gristle and red shiny pulsing muscle that lies just beneath the surface of life's rosy cheeks. They don't hear a small boy cough in the middle of the night and start to shiver, terrified of what it might mean. Don't flash to lab coats and thin sheets and bright florescent lights. Don't mentally list what to pack and for how many days and how quickly it can be done while lying in bed trying to slow a racing heart and dreading the next noise out of their child.
I try so hard to sink fully into the plodding rhythm of our full and happy life. I look forward to our dates with friends and waving goodbye to Simon as he rides away on the school bus and doing my yoga class in the mornings. I love our lazy evenings spent lying in the hammock, playing "surprise!" and reading "Hoppy Passover" again and again. Walking to Arizmendi on the weekends to charm scone-munching early-risers. Watching Simon's gorgeous little body romp around the backyard naked when it's warm enough to have some naked time. Blowing bubbles in the bathtub before bed. Simon's closed-eye smile as he fakes sleep when we wake him up in the mornings to go to school.
I do NOT appreciate being reminded that that can all be ripped away from us, even for a week like last winter, by a few goddamn coughs that could put us back in the hospital.
Give me some goddamn space, you dumb-ass disease.
Seriously.
I get it. I know you're there. Message received.
Just give us some frickin' SPACE to be normal parents without terror poking it's sleek, beady-eyed, needle-toothed head through the surface every time there's a little tremor.
Back. Off.
p.s. Simon seems fine this morning. Laura and I...a little rattled.
4 comments:
Feeling your pain, Jaime. I hate those nights! Let out all the GD's and four letter words you need and then go treat yourselves today!
Hugs from Denver,
Kera
(Eden's mom & CCF listserve friend)
So, so, so familiar!! HATE IT!! Sending healing vibes to the panic machine! Love Kathalijn
Peace and prayers and love and thoughts and vibes and hugs and rest and fingers crossed to maybe run into all three of you, rested and healthy, at the FM tomorrow morning :)
xoxox
Just found your blog... And this is also our life. Lachlan is 8 months and has severe DCM & LVNC. He has been doing much better than expectd, but has developed a cold a few days ago, but thought we should be cautious and get him checked. We are tonight sitting in an isolation room on a penicillin drip. Like most parents we should be at home letting him ride out these colds... But we know it only takes one cold with our guard down. Real life lessons of survival.
Best of luck, I look forward to following more of your journey.
Lee
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