Our Home Isn’t a Hospital


The first thing you’ll notice after walking through our front door is a bright blue accent wall to the left. Your attention will then be drawn to the strand of outdoor lights I decided looked best indoors, and amidst the cozy candles, potted rosemary and eclectic paintings you’ll notice framed photos of our friends and family.

In the center of the living room, my step-son, incredibly small for a 6-year-old but still quite the butterball, is likely to be sitting (unassisted!) on top of a festive blanket surrounded by pillows — just in case. Daddy is his best friend, and he’s Daddy’s, so you’re probably going to see them glued together on the blanket watching “Madagascar.” My step-son will coo, make the biggest grin you’ve ever seen and stick his soft, little thumb in his mouth. He’s the bubbliest child your eyes will ever have seen. We call him Sticky.

Then, there’s the darling Thumbelina. Her physical therapist is still working with her on sitting up, and she’s getting the hang of it, but since it’s still a process. I’ll be answering the door with her in my arms. She’s like me — she soaks in snuggles like they’re sunlight. We get along that way. Her cheeks are rosy, her bow is big and bright and you’re going to notice how dainty her smile is. Despite her size, there’s a fierceness to her you can’t ignore. Trust us, she won’t let you.

Stepping further inside, you’ll be politely offered a tour of our home. It’s an opportunity to see our newest renovations. I may ask what color I should use for the baseboards. During the tour, we’ll let you know that chicken parmesan is for dinner and ask you to join us. We sincerely hope you’ll stay for more conversation after eating. As a reaction to the walk-through, some people may decide they shouldn’t accept our invitation. You see, sometimes guests see a hospital in our house and assume there are polite visiting hours.

We understand. There are some “infirmary accents” included in our décor. Examples include, but aren’t limited to, a ventilator and feeding pump next to Thumbelina’s crib, another pump next to Sticky’s bed, a suction machine with suction catheters near the front door and plenty of syringes and mic-keys by the sink. We realize some of the equipment looks daunting with lots of lights, tubes, buttons and parts. The most intimidating thing people notice is the ambu bag we keep for Thumbelina.

Their mother’s home looks the same. She keeps a beautifully decorated house, a place that smells sugary and highlights her sewing talents. The equipment is there, too. Every piece in nearly the exact same places.

We just hope you’ll come to understand that our home isn’t a hospital. Please focus on the sloppy drawing hanging on the fridge and the sofa that sinks like a cloud when you sit in it. We keep music playing — any genre you like will do. Notice how our home looks simultaneously quite lived in and artfully pulled together. There’s almost always something brewing on our stove or baking in the oven.

Sure, the kids have feeding tubes. Thumbelina has a trach. These can be a reminder to guests that they have Joubert syndrome. But notice the Ninja Turtle bed and pink, fluffy crib. When Sticky laughs, everyone in the room lights up. Thumbelina would love to show you her nail polish or how to make ballerina toes.

We live our whole lives here. This is a place for Southern food, prayer, noisy toys and ceaseless showings of “Madagascar.” You’re more than welcome to slip off your shoes (please ma’am, thank you, sir), have a drink and talk about life for hours. This isn’t a place full of our sadness and anxiety; rejoice with us. Love, pray and laugh.

This is not only our house, it’s a welcoming home.

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Lead photo source: Thinkstock Images


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