There’s a swing directly to your left as you walk into my home. It takes up the entire door way that goes into what is now Parker’s Home School Room.
Straight ahead and to your right you’ll find my priceless collection of oxygen bottles. The chair for the computer desk is often found on it’s side. This is to make sure a certain Brave Hero doesn’t make his way to the top of that desk, plop his butt down on the printer, and print of a thousand and one copies of the printer’s diagnostic page.
It’s not unusual to watch Parker walk over to a vent, remove it’s top, then reach down inside to find a favorite toy. He uses our vents to stash his bling, successfully keeping it from being ripped off by older brothers and sisters.
Parker’s bedroom looks like something straight out of the PICU. And I won’t tell you how much of the stuff in his Homeschooling room was trash picked, painted and then put to use.
A corner of my kitchen counter is filled with all kinds of stuff necessary to keep a Brave Hero going. Medicine syringes. Blenderized diet cups drying. Clean tubing and a chewy or two. I’ve tried many different ways to keep this organized and nice looking. Obviously I finally give up. sigh.
People often talk about what they would grab from their homes in case of an emergency. Pictures. Important papers. A family heirloom. Me? Oxygen bottles, Parker’s vent, his medications, and the emergency bag we have made up for him.
That’s life in the medically fragile/special needs lane. You don’t see houses like mine in magazines. How many pins have you seen of ways to cleverly disguise vast amounts of medical supplies?
That’s okay though. Some things are more important than others. And that is one of the best lessons learned by being Mama to a Hero.