By our daughter, the amazing sister, daughter, friend, person and writer, Katie
My parents are really, really good at making babies. They started at 21 with me, and they didn’t stop there–then came Steven, and then John, and then almost exactly one year later there was Mike, and then Molly, the sister I had waited years for. Finally, there was Larry, and we were all ecstatic. Everyone, really, but my mother. She was really happy, sure, but even though she was in great shape–my mom was running regularly, gardening, and was only 36–she couldn’t shake the feeling during this pregnancy that inside, something was really, terribly wrong.
It was a hard feeling to explain, and most folks told her to shake it off. One day, my parents were in for a routine ultrasound, when the nurse left to go get another nurse. And then that nurse left to get a doctor. “This is so kind!” said my mother, “Wow! I’ve had five kids before this, and I’ve never had an ultrasound like this before.” The doctor smiled at her, very gently, and said “Kathy, you don’t want to see me.”
When my parents came home, they called us all into the living room. My mom quietly cried while my dad told us that Larry had spina bifida, and while the extent of the defect was not known, it looked like he’d have a hole at least the size of two adult fists in his still-developing abdomen, and an 80% chance of dying in my mother’s womb. The doctors talked heart malformation, mental impairment, cleft palette, and abortion.
My parents decided that any chance Larry had to make it was a chance they wanted to give him, and so one he was born early one June morning, when I was 13. The hole was much larger than they had expected. From the bottom of his ribcage all the way down between his legs, there was no skin, no muscle: only membrane. His heart, though, was perfect.
Later that day, my dad did something that I didn’t know about until years later. He walked into the NICU, bent low over his youngest son, his namesake, and said, “Larry, we love you, and we’re so proud that you’re here, and you’ve got great brothers and sisters waiting for you, but if you’re too tired, if you have to go, it’s ok. You can go, and we will love you always. No matter what.”
Larry didn’t go. He stayed, and it was rough. For a year, our parents were pretty much always going to or coming from U of M. Sometimes, they were there for days, with one of them being gone for nights, so my brothers and sister and I had to pull together to be good to each other. There was a lot of trial and error there. I’d make ramen for dinner, or pretzels and oranges and Campbell’s clam chowder, and sometimes I’d microwave tortillas with cinnamon and butter and brown sugar and call them elephant ears. John and Mike got to asking me if they could go to friend’s houses, even when my parents were home, and Molly, who was four, started calling me “Mama Kate” when she was in the tub and I wash washing gum and peanut butter out of her hair or whatever else it was that she managed to get into. I know that I, for one, definitely did get mean and resentful, like any 13 year old kid, but really, I was always looking to do more. It wasn’t because I was a great kid; it was just that everything I did felt a little like a magic spell helping us keep it together, keep it ok.
Eventually, Larry came home and life got into a good, if quirky kind of normal. The doctors weren’t sure if he’d ever walk, so Larry would swim around our kitchen floorboards on his back. You’d be standing at the dining room table, looking at someone’s homework, and you’d feel a tiny hand on the back on your ankle as he used your leg for leverage to push across to the living room. We all learned how to suction a trach for the time he had a trach, and how to change a colostomy bag and deal with feeding tubes.
As he got a little stronger, the docs decided that Larry didn’t need his trach anymore, and so we started covering it with a cap to get him used to breathing through a mouth hole instead of a neck on. That’s how I heard my little brother laugh for the first time. He was so shocked that he laughed again, and we laughed because he was laughing, and some of us were crying, and he laughed because we were laughing, and my god: what a gift, what a holy and healing thing this was to see and to hear.
We were all home one day during summer break, and Larry was finally strong enough to sit up. He was scooting around the kitchen, playing with a tiny Pikachu, when, like little kids do, he put it into his mouth. My back was turned when I heard my mother yell “Larry…he’s choking!” I turned around, and my mother was already on the phone with 9-1-1, talk-sobbing to the dispatcher on the other end of the line. My father came running into the room and knelt down, but what could any of us do? Larry had no stomach muscles, so there was no way we could give him the Heimlich. I saw my littlest brother gagging, his eyes bulging, and I slammed the screen door open and I ran, down the wooden stairs and towards the street.
Somewhere in my wild animal brain was the memory that one of our neighbors was a nurse, and I had an idea to run to her home and bang on her door like I did the time Mike got his neck caught in the zipper of his winter coat. Really, though, I was running because I had no idea what else I could do. I was running, the great hope and terrible, bitter fear that is life banging away in my chest, and I was yelling “Someone–please–someone! Come save my baby brother, because I can’t. I can’t.” And the knowledge that I couldn’t, that there was nothing that I could do, felt like it would break my 15 year old self in two.
I had been wanting so bad to be a grown-up, but I couldn’t do this. I couldn’t help–I needed help–it was the worst of realizations, but in that moment, I became the scared little kid that I really was. And before I reached the sidewalk, one of my brothers hauled open a window and yelled “Kate! It’s alright, come back inside.”
I came back, shaking, back into the kitchen where my mother sat weeping with relief and my father–my father, with the big hands like bear paws, sat cradling his youngest son in his lap. He had managed to oh-so-gently crook his finger down into my brother’s throat to scoop that Pikachu out. Larry was blinking rapidly like he does when he’s trying not to cry, but other than that, he was fine. “I don’t like that toy” he said. And we all busted up laughing. And my dad told him “That’s why you don’t put toys in your mouth”, and then my dad looked at me and said “Kate, its ok” and that’s when I knew. It really was. And next week, Larry will turn twelve. (Written by Kate in 2013. Larry is now 15 and going strong.)
Submitted by Kathryn Prout