Welcome to all the new subscribers. I’m so happy you’re here.
Today’s story will eventually be tweaked and adapted into book form. Here are some details about my family to get you up-to-speed:
Em is my daughter. Her full name is Emily, but we mostly call her Em. She’s just over two-and-a-half-years-old and has severe cerebral palsy. In this story, she’s just twenty-six days old.
Sara is my stepdaughter. She’s eight years older than Em, so she’s obviously an eight-year-old in this story.
Allison is my wife. I won’t be disclosing her age, but she is younger—and way smarter—than me.
If you enjoy this story, please share it with someone.
Okay, here goes.
We’re finally loading Em into the car to drive her home for the first time. It’s been twenty-six days since she was born on her exact due date, June 4th, 2018.
It’s a breezy, yet warm day in San Francisco. A rarity. T-shirt weather any day of the year in SF is a welcome surprise. We’ll be making the hour-long drive north to Sonoma where it’s supposed to be over one-hundred degrees today. And our home doesn’t have air conditioning. Not exactly what I had in mind when I thought of a warm welcome home. Besides the heat, we’re excited to finally be going home.
Yesterday, Em did the standard car seat test that all newborns do before being sent home. Wait. So apparently, this is not a thing typical babies need to do. I brought in the seat from our car and she hung out in it on the floor of the hospital for ninety minutes straight. The point of the test was to make sure her oxygen saturation levels didn’t drop. She hated it. Allison and I tried pleading with her and singing her songs to no avail.
But she powered through the test and passed.
After the successful car seat test, there was one more test we needed to pass before we got discharged. We stayed overnight in a regular hospital room with Em as a test run to make sure we were able to run the feeding pump and administer her meds without any issues. It wasn’t exactly restful since we also had to keep track of Em’s temperature every hour and jot down whenever she had a wet diaper. And the nurses would periodically come in and grab that data for their charting.
It went as well as it could have. We’re as ready as we’ll ever be, I suppose. Our experience is going to be much different than typical parents, though, no matter which way you cut it.
Em has a temporary (hopefully) feeding tube in her nose called an NG tube. We tape the tube to one of her cheeks so it stays in place as best it can. We’ve already tried so many different taping techniques, but none of them are ideal. It feels wrong to put tape on her soft, smooth, perfect baby skin.
She’s already quite adept at pulling the tube out. We keep a mitten on whichever hand is on the same side it’s taped to so she can’t grab it. At least that’s the theory. The other day, there were four of us standing around Em’s isolette when she finagled her hand out of the mitten and yanked out the tube like a feeding tube quick-draw artist. The nurses put it back in that time, but now we’re on our own if it comes out. Or, I should say, when it comes out. Allison was trained on how to place a new tube yesterday and she feels confident. I’m guessing she’ll get plenty of practice at home.
As I drive and look at Allison in the rearview mirror, I think about all the things I’ve missed about home. I can’t wait to sleep in our bed tonight. I’ve spent the past twenty-six nights sleeping on uncomfortable vinyl chairs and thin-mattressed hospital beds. I’m looking forward to hearing our pug Ella’s nails clicking as she follows me around the house like a little furry shadow. It’ll be amazing to see our extended family interact with Em without wires and tubes hanging off her (besides the NG tube, of course). And an Allison homecooked meal of crispy tofu or enchiladas sounds incredible too. I’ve eaten more hospital cafeteria food in the past month than anyone should in a lifetime.
But what I really can’t stop thinking about is the food that will be waiting for us at home. Allison’s dad Don and his wife Beth are at the house with Sara and they’re grabbing us take-out from our favorite spot—Gourmet Taco Shop. I can already taste my chicken soft tacos.
We pull into the garage and as I exit the car I hear the familiar sound of Ella sniffing under the door to the house. She doesn’t hear so well anymore, but she still somehow senses us when we get home.
Sara is beaming with energy and excitement. With Don and Beth’s help, she drew a colorful banner that says “Welcome Home Em!!” with little drawings of balloons, hearts, and swaddled babies around the words. It’s hanging from the top of the doorway to Em’s nursery, just low enough that my hair grazes it as I walk underneath. Em’s her first sibling and this has been a much different experience than Sara expected. In the days leading up to the due date, we would catch Sara reading to a doll, like she was practicing for the day Em arrived.
Sara sits on the couch and Allison carefully lowers Em down into Sara’s small lap. Sara looks down at Em and then up at Allison with pure joy on her face. Em is watching Sara’s every move. Em has been through so much. Even at such a young age, she’s the toughest person I’ve ever known, but she still seems delicate and fragile in Sara’s lap.
Within thirty minutes, Sara has already read five books to Em and has changed her into a new outfit.
I unpack our bags and see the red, plush REACH helicopter the medevac team gave to Em after they airlifted her from Sonoma to Santa Rosa. Most kids get a soft cuddly teddy bear as a first stuff animal, but Em is not most kids. I’m going to grab some fishing line from the garage to hang it above Em’s changing table. Even her first hanging mobile will be different. I want to display it as a badge of honor—not only for Em but for our whole family.
As I’m walking back to the garage, I run into Allison in the hallway. We give each other a look that can only be explained as a combination of relief, happiness, and uncertainty about the future. I let out a deep sigh that suddenly reveals itself to be a release of all the pent-up energy and emotion of the past twenty-six days in one fell swoop. I begin crying and collapse into Allison’s arms.
I think of Allison’s water breaking next to our bed, just steps away from us now. I think of Em’s dull, grey, unbreathing body on Allison’s belly. I think of Em almost dying more than once.
All of that is behind us. We’re starting down a new path now, but we’re not sure where it’s heading.
Thanks to Sasha Levage for her amazing editing help. If you like my writing, I think you’ll enjoy hers too. Check out her newsletter Stories of an Anxious Traveler.
If you enjoyed this piece, could you please let me know and give the heart button below a tap?