The Day the Linen Closet Died

So. Many. Boxes. Just dropped off in my living room and I was expected not only to know how to use the items inside, but also to find a spot big enough to store them in an organized fashion so all the many [many!] hands working in my home would know where to find the supplies they needed.

That’s how this thing works. You take a baby home on a ventilator and the housewarming gift you receive is the presence of a DME (Durable Medical Equipment) company and all of their “goodies” being offloaded to you. A welcome offering. A tease of what the next decade or more (if you’re lucky) will bring. Loads of supply shipments – chux pads, ventilator circuits, suction catheters, pulse oximeter probes.

And so begins the “overtaking of all the space” movement for families like mine. Our home is now a PICU Omnicell. The storage for beautiful guest towels and extra bedding is replaced with bins and tubs attacked by a label maker. Organization is key when there are staff members working in your home around the clock and they all have to access the closet – previously known as your beautiful linen closet – to do their job.

Labels read “Suction Canisters” “Gloves” “Oxygen Tubing” “Vent Filters” – This is your life now. Welcome to it.

I caught a glimpse of our linen closet last night. The door was open and the hall light was on. I just sat and stared at it for a long moment. I pondered out loud to Ryan, “I wonder what normal people have in their hall linen closets?”

We’ve lost our garage space, our hall closet space, our kitchen cabinets, our pantry. It’s all dedicated to storing and organizing all the equipment required to keep a human alive. We trip over bikes in our garage because we have no place for them, since the bike storage is taken over by catheters and sterile water. We keep an Instapot on top of our dryer because an entire kitchen cabinet is full to the max of meds, syringes and ports. We hide PT benches and equipment behind our couch so we appear “normal” when people come over.

It’s an odd feeling to contemplate what a normal house would look like, knowing that if you had a “normal house” it would be because your child wasn’t living in it with you.

In random moments like this – catching a glimpse of a linen closet in the light or seeing your neighbor’s tidy garage while you’re out on a walk – that you evaluate what your priorities are. Sure, I would love a Home & Gardens Home, but that wasn’t in the cards for me. Learning what you have to let go of helps you realize what you want to hold on to.

Our house isn’t perfect, but it’s full of sweet memories and little people and loads of {loud} fun. And honestly, I think I like that more than a house that looks like a Container Store show room.

Out of Body Experience

A quick story. An experience unusual for me.

The setting: my house.

The characters: Mom, Grayson, Ethan, Foster Daughter.

Missing: Ryan and Hayden (who were inpatient overnight at a sleep study in the hospital.)

Once upon a time……….

A rare, cool summer evening, that’s not only tolerable to be outdoors, but pleasurable was gifted to us this evening. Late summer nights are my favorite. When the sun isn’t ready for the day to end just yet and it keeps hanging around just a little bit longer. Popsicles and bicycles, sidewalk chalk and neighborhood pickup basketball games. These sights and sounds of summer I treasure.

I had taken up residence in my lawn chair out front, watching the boys riding bikes up and down our quiet street, while little Miss and I played with bubbles and sidewalk chalk. No one was fighting, which is an extremely rare treat. 😉 Each of us, just enjoying each other’s company, wishing the night wouldn’t end. We migrated to the back yard and the kids jumped on the trampoline and climbed on the jungle gym while I sat on the back porch and just watched and listened to their laughter. We stayed out past our normal bath time because it just felt right and why not? – it’s summer. This moment here is what summer nights were made for. Late night fun outside, just riding bikes and jumping on trampolines, playing pretend with the neighbors and your siblings. Not a worry in the world. Not in my world anyway. I was free – for just a moment.

I was free from worry about what time the cath timer will alarm. I was free from dragging the suction machine around. I was free from the beeping reminding me to check the emptying oxygen tank in order to raise up saturation levels. I was free from being called inside at a certain time (regardless of the season or the amount of beauty the night held) to begin night treatments. I was free to sit on the back porch and just enjoy my children being children. I got to watch them having fun and enjoy life, which in turn was an enjoyment for my own life. I was free to do these things.

But I wasn’t free of the guilt of enjoying the freedom. Part of my heart wasn’t with us, even just for a night. The piece missing was having a legitimately fun evening inpatient because that’s what he enjoys – meeting new nurses, playing TV games on the hospital network, scanning his meds and his hospital bracelet with the handheld device. He doesn’t enjoy riding bikes, jumping on the trampoline, eating popsicles. I shouldn’t have felt guilty; he was having a magnificent summer evening with friends. But I can never forget. I’ll never forget I live two lives. I’ll never forget I have two families and even when I switch back and forth from each of my mom roles, I’m never free of the other one.

Moral of the story: If you have the freedom to watch your kids being kids without a timer telling you when you have to go empty their bladder, administer their med, perform their respiratory treatments, replace their oxygen tank, turn on their ventilator – please enjoy that time. Look up from your phone, be present with them and be thankful for that time and freedom. And try to put the guilt to rest, even if it’s just for one beautiful, cool summer evening on the porch.