To my son who doesn't know he's on a ventilator
My sweet boy. I see you in all of your glory. I see you crawling, playing and barrel rolling over like you're heavy machinery that'll knock down anything that's in its track.
In just a few months, you'll be two years old. You won't remember these days. You might not even have flashbacks of the little moments I cherish with you. I watch you in awe. You are fierce, brave, and have the courage of a lion.
One of your favorite toys to pull on and shake around just so happens to be connected to your ventilator tubing and tracheostomy tube. You hold it and pass it around from your left hand back to your right hand and you are happy. It's been one year since we decided to go through with your tracheostomy surgery.
I vowed that you would always be able to explore the things that made you who are, each time you went through a surgery. You've explored your tracheostomy tube with your little hands by grasping right around the trach's hub. You've swung your tubing and catheter in the air like it was a glorious flag that everyone should smile at. You love threading your tiny toes just right on your feeding tube extension and then you pretend like you're running the Boston Marathon. I've watched as you lovingly hold onto your suction catheter and I accept that it has become a staple for a "security" item for you.
I'd be lying if I said I didn't cringe at the things I've seen you do. I get scares that come in like a wave, but you quickly wash away my fears. You are loved beyond measure. You are safe, and monitored around the clock. There are moments that I have a hard time redirecting you from some of your adventures and exploration of your medical gear. I promised myself after everything you've been through though buddy, that I wouldn't let you live in a bubble. If you're happy and safe then my heart is full.
There are days I wish you could be playing outside rolling around in the grass with your dogs, or walking around in the yard to feel the cool summer rain roll in. I want to see you picking out your favorite rocks in the driveway, or finding the dandelions in the yard that look like awesome flowers to pick for Mama. I don't know what I'd give to see your cheeks rosy red while you play in the snow, or be outside with you while you run through the water from the garden hose. It's a safe bet to assume that all of those things would be unsafe and frowned upon while you're hooked up to your ventilator. You know, the whole breathing thing and mechanical ventilation that's plugged in is pretty important and trumps those activities.
I pray every night that you can grow, get stronger and successfully get off of ventilator support. My heart tells me to be patient. My head reminds me that when you're strong enough and ready, you'll be off of ventilator support. Can I tell you something? That day might not come. I don't have this super power of looking into a crystal ball to foresee that. But the truth is that I'm here unconditionally. I won't ever stop loving, advocating, and taking care of you if the day never comes where you don't need to breathe with the support of mechanical ventilation.
You see, the way I see it is this:
You are by far the most amazing miracle I've ever had the pleasure of knowing. There are days I wake up and don't know how I was chosen to be your parent. You make me a better me. The amount of patience, faith, hope, love, and happiness that you've brought out in me is incredible. There aren't words to justify just how much you've changed my perspective on life for the better.
Your ventilator doesn't define you. Your tracheostomy tube shows how fierce you are. Your scars tell more stories of triumph than most people have experienced far into adulthood. When you shake your ventilator tubing and barrel roll over it, it reminds everyone around you of the presence you bring to any room you're in. You are the sunlight on any given day. At less than two years of age, your smile brings out feelings in the hearts around you that lights their souls on fire with love.
If you never know the days of Mom and Dad dragging around your ventilator cart, I'll be sure to tell you the stories some day. For now, I'll soak in the moments of gratitude as you progress and hit developmental milestones that most people would guess you'd never make it to.
To my son who doesn't know he's on a ventilator, I see you. You are miraculous.
Proud Owner and Founder of My Hero Calls me Mama