In honor of Mother’s Day this week, both of our storytellers are sharing stories about the good, the bad, and the unexpected parts about being a mom.

Part 1: Silvana Clark finds a bat in her newborn’s room and thinks it may have bitten her baby. 

Silvana Clark’s storytelling career began in high school when she made up creative stories to get out of boring classes. Since then she’s gone on to write 12 books, travel to 63 countries and train her dog to star in TV commercials. Silvana has told stories to groups ranging from the Canadian Llama Association to the American Sunbathing Society. (Yes….nudists.) She’s trying to figure out how to tell a story about when she was a recreation major and had to dissect a cadaver. No gloves provided in those days!

Part 2: Leah Moore navigates the challenges of raising a daughter with cri-du-chat syndrome alongside her other children with their own special needs.

Leah Moore has been teaching English and Theater for over sixteen years. She is a graduate of the University of Wisconsin and has a master’s in Educational Theater from New York University. She was the recipient of the prestigious, Teacher of the Year award, presented to ten New York City Teachers annually. She first premiered her writing on her parenting blog, www.lovingyoubig.com, which has an international audience in over 57 countries. Her family has been featured in a documentary about cri du chat, a rare chromosomal disability. She has been a guest on popular media outlets, such as Forbes and ESPN, working to create more stories centering around individuals with disabilities. She is the author of the memoir, Loving You Big: one family embracing the unexpected. She lives in New York with her husband, three children, and her daughter’s collection of rainbow wigs.

Episode Transcript

Part 1

It's 1990, 5:30 in the morning. I'm sitting in a comfy rocking chair feeding my six‑month‑old daughter. There's just enough light on her little ladybug night light that she can look up at me and I see her big brown eyes and she's content. I'm thinking she's a perfect baby and I'm a pretty perfect mother and the world is wonderful. This should be a Hallmark commercial.

And I feel a whoosh over my head. It's not quite a breeze but it's a whoosh. So, I turn on the table light and I look around and there on my daughter's white lacy curtains is a bat. A bat.

I grab her. I run into my bedroom where my husband's sleeping and I yell, "Alan, there's a bat in Sondra’s room."

He jumps up and he's disoriented and he says, "I'll take off her screen and I will just sweep the bat out the window."

Well, at that moment I scream. I scream because I see blood in my daughter's ear. The only explanation is that a bat with rabies has been sucking the blood out of my baby and she's turning into a vampire.

So, Alan starts heading to the nursery and all of a sudden, even though I'm so nervous, there's something in the back of my mind that says, “Wait, wait, wait,” because I remember reading if a bat bites you, you have to have the bat tested.

So I yelled, “No, wait. We have to test the bat for rabies.”

And then we don't know what to do. There was no Google back then and how do you get a bat and test it for rabies?

So, I call 911. I tell the dispatcher what's happening and she says, "Yes, you have to catch the bat to have it tested for rabies, but first you have to kill it." So she said, "Make sure whoever goes into the bedroom that your body is covered from head to toe, because a bat with rabies might attack.”

And then she says, "Do you have a hazmat suit?"

I say, "No."

So she says, "Just cover your body."

So, Alan runs off to get something to wear and the dispatcher says, "I'm gonna call the health department and we'll figure out what to do next after you kill the bat."

A few minutes later, Alan comes upstairs. He's wearing rubber boots, jeans, a ski jacket, leather garden gloves and his motorcycle helmet with the visor down. And he yells, "I'm going in," holding his weapon of choice, a tennis racket.

He goes into her room and I hear slamming and crashing. I hear a shell fall off the wall.

He comes out, lifts up his visor and says, “I can't do it. There's a baby bat attached to the mother bat.”

We freeze.

The phone rings and it's someone from the health department. He wants to confirm that there was blood in my daughter's ear, and I confirm. And he says, “That is not good."

Then he says, "You need to kill the bat, but not with a tennis racket. The brain has to be intact. So, what you do,” he said, "get a mason jar, catch the bats in the mason jar, turn on the engine of your car and then hold the jar with the bats on the exhaust pipe, and in 15 seconds the bats will be dead.”

So, Alan leaves to go get a mason jar. And the health director goes on to say, "This is serious, Silvana. Your daughter, if the bat has rabies, your daughter will need 20 shots in her stomach and also a shot at the site of the bite. And I have a call in to someone, a specialist in New York, because they are all trying to figure out how to give your baby a shot in her ear.”

At this point, I just basically want to melt because I don't know what to do, but I know I have to be strong for my baby. I'm kind of keeping this all in.

He says, "You're going to need to get a bat remediation specialist to figure out how the bat got in your house."

And I'm thinking, “This is just too much information.” I'm looking at my daughter and I'm sure there's foam coming out of her mouth and I'm really starting to panic.

So he says, “Here’s the real important part. You have 20 minutes. You or your husband need to kill those bats, bring them down to the Bellingham Greyhound Bus station, because we're going to ship them to Seattle and have them tested for rabies. So, don't be late. Your daughter's life is at stake.”

This is no longer a Hallmark commercial. This is the Blair Witch Project.

My husband comes up. He's got the mason jar, he goes in the bedroom. I hear crashing again and things are falling down. The rocking chair is tipped over.

He comes out and he triumphantly holds the jar with the bats up in the air and it's covered with a copy of Goodnight Moon. He runs down to go to the garage.

I'm thinking, “In 15 seconds those bats will be dead and he could get to the bus garage.”

I look at my little clock radio and one minute goes by, two minutes goes by, three minutes goes by, and there is still no car leaving the driveway.

So I run downstairs to the garage and Alan is bent down on the exhaust. He's got the jar right there and he looks at me with anguish on his face, and he says, “They won't die.”

The mother bat just has these wings kind of slowly coming up and the baby bat is barely clinging to her. It is horrible. I don't want to kill these bats. I was a card‑carrying member of PETA for three years. I sat in a cage at Western Washington University to protest that they were doing research on monkeys. So, I really don't want to kill this bat, but my daughter's life is at stake. I don't know what to do.

And then Alan's face lights up and he says, "We'll nuke them!"

He runs into the house with the jar, we put it in the microwave and we nuke the bats and they die.

He races to the bus garage, just makes it there. It's easy to spot the guy from the health department because he's carrying a huge box labeled with fluorescent labels that say, "Danger: biohazardous materials, stay away."

They ship the bats to Seattle and we have to wait 48 hours for them to be tested. Waiting is just agony. It seems like time just doesn't go by. But like all Hallmark commercials, this has a happy ending. No rabies.

And for those of you that like facts, it takes 12 seconds to kill a bat in the microwave.

Thank you.

Part 2

I'm not very competitive. I was the girl on the third‑grade soccer team that was like, "Oh, you're trying to score? Let me just step aside so you can get to the goal faster."

This was really great when I became a mom for the first time, because I learned really quickly about the mom competition, usually around the water cooler. It usually sounded something like this, like, “Oh, my Sebastian started walking around six months.” And we'd all be like, “That's great.”

Then someone else would say, “Oh, well, you know, my Steven actually started talking like right after his Apgar test.” Then everyone's like, “Wow!”

But then the third person would have to jump in and say, “But our Samantha, she learned all of King Lear while I was nursing her.”

And I would stand there with the proudness of being a new mom and didn't know what people would say to, “Well, my almost‑one‑year‑old is lying on her back staring up at a ceiling fan. Anyone cheering for that?”

I was a little worried about it, but she was going to be fine. She's fine. Just a late bloomer. But my husband and I did have to take her to a developmental pediatrician, because that is what you do when your 11‑month‑old is meeting the same milestones as a newborn.

The barrage of questions from the doctor started immediately. “Does she know where her nose is? Does she look at you when you call her name? Does she pull to stand?”

We kind of just stared at him, so he said, “Let's just give her a pencil and see what she can do.”

So, my husband, Zach, and I cheered her on. “You can pick up that pencil, Jordan. Pick up that pencil.” And all she did was laugh.

It was about an hour of this torture, an hour of the doctor's notations, an hour cheering, and Jordan's giggling. She did not do one thing the doctor asked her to do. If he asked her to glance to her ceiling fan, I'm sure she would have aced that, but she couldn’t do any of it. I needed to get out of there, because I come from a family where we find a solution. I couldn’t read any more, or study any harder or ask any more questions to get Jordan to pick up that pencil.

When I became a mom, I thought my weekend would be spent with my favorite things, like taking nature walks and naps and going places where you could find the words ‘artisan crafts’. These words got really quickly replaced with the words that I had never heard of. Hypotonia, dysregulation, microcephaly. In fact, my entire life changed with just three words, Cri‑du‑chat.

In French it means ‘cry of cat’. In medical school, it means a rare chromosomal disability caused by a deletion that occurs one in 50,000 people. At the doctor's office, it means tests and therapies. But at the kitchen table, it meant our daughter. Our Jordan.

I thought I could love this out of her. I, like so many other parents of kids with rare disabilities, had absorbed the societal messaging that having a disability was something that needed to be mourned and that we could fix it with enough resources. That maybe I could find a different doctor, or give her more therapists, or have her eat things like ginger‑soaked marzipan. I could fix this, but, sometimes, you just can't.

Four years later, we found ourselves in the NICU with her twin brothers, Austin and Oliver. They were having trouble eating and breathing at the same time. I mean, I couldn't really. blame them. I had been having trouble catching my breath for years. But we took them home into a house of advocacy where we had been practicing what it meant to be a family, raising a child with a rare disability.

We didn't really know what her brothers were picking up on. We didn't really know what they were understanding. But we also loved that, to them, she was just their big sister that kissed too much. But they were there at the Odyssey Diner when she broke all the dishes, and they were there in the Norwalk Aquarium when she thrashed through the turtle pond. They were there at the Bronx Zoo where we ransacked half of the gift shop, and they were watching, always watching.

On one particular afternoon, a very hangry Jordan needed my attention and bit me right in the butt to tell me she needed a bowl of grapes. I think it made sense to her. Her mouth is the same height as my butt. And while we were told that she would never walk or talk, she had been finding her way in the world and didn’t quite have the language to say, “I'm hungry.”

So, I calmed her, peeled and sliced the grapes, like all nervous mothers do, and got her calm on the couch. I returned back to the kitchen counter and this time felt another bite right on my butt.

I turned around to see Austin, Twin A, standing there with his bowl and a smile waiting for his portion. Because the brothers didn’t see her limitations, only her actions. They didn’t know that behaviors that I would never condone for them, we celebrated for her. We didn’t think she’d ever stand up by the counter. We never thought she would scream to us. So they weren’t acting out. They just thought this was the way things were done around here. No ‘please’, no ‘thank you’, just bite.

I have learned that child's breakdowns are a prerequisite of parenting. If you've been near a child, it is inevitable that their little fingers will reach under the bathroom door to try to get to you while you need two seconds to pee, or they will throw decapitated Goldfish crumbs at your head while you're driving, or they will cry hysterically because their crayon is just too red. In most of these cases, they will stop, but not Jordan. Jordan does not stop.

When Jordan tantrums, it is like her entire body is releasing all of her energy. This, we have learned, is the dysregulation. She has to bite and kick and scream and hit until it gets out of her. We don't know why she does it. We've asked the doctors. They said maybe it's because of the hypotonia, which is just every muscle in her body is weak. Maybe it's behavioral. Maybe she just really likes it.

But we know that it impacts the entire family, but nobody more than Jordan. It's like her rational self disappears and she's just pure energy. When she comes back to herself, it's always the same script. “I sorry. I never do again.” But there's always an again.

I try to ignore the stares from the other kids, and I try to ignore the purposeful avoidance from other parents. And I try to push down the guilt I feel every time we leave the house. That maybe this trip is just going to be too much. Or the resentment I feel towards every other family that gets just to go places, and that's it. Or the moms and the daughters that are just walking. I try to ignore all the jealousy I feel to that.

Because when Jordan is dysregulated, only two things matter. We need to keep her calm and we need to keep her safe. Parental shaming has no place in that.

On one of these Sunday afternoons that became our new normal, Zach and I decided to take the kids to the Westchester Mall because they have a free play space, and it was just too much. Her legs were too tired to leave, her tongue was too tired to talk, and all she could do was flail and wail. She was so inconsolable, it took about an hour for us just to get her to a safe space.

People would literally walk around us, high heels would tiptoe over her legs, as our family tried to keep her safe and figure out what to do next.

I turned to Zach and I said, "All right. So, are we gonna get a wheelchair? Should we call the police? I mean, we can't live here forever.”

And while we were trying to figure that out, Austin and Oliver, her twin brothers— correction, Superman Austin and Superman Oliver, who had come to the mall with their capes on, had been entertaining themselves with a game called "Find Out What's in Mommy's Pocket."

At that point, they had pulled out a toothpick, some gum wrappers, a discarded matchbox car, who knows what I keep in there, and they ultimately landed on some broken crayons.

They walked up to Jordan and said, "We're gonna help you."

My husband said, "Oh, no, no, no, boys. We just need to give Jordan a little space. We'll get her out of here."

And they said, "Well, she doesn't have any wings,” and they proceeded to take their crayons and draw a wing on each of her arms, each of her legs, each of her shoes, and, together, they drew one on her back.

And they said, “Okay, Jordy, you've got your wings now. You can fly, too.”

And she stood right up and she walked to the elevator and said, “Come on, brothers.” And her twin brothers followed behind her laughing in unison as only twins can.

On their way, Oliver stopped and he gave me his crayon and he said, “Here, Mommy, you keep this. You know, for next time.”

And on my really difficult days, because there are really difficult days, I think about my superhero boys and my brave daughter and those crayon wings. I think about how I try to love the disability out of her, that with enough resources I could make this go away. But with the introduction of sign language and walkers and wig‑clad dance parties with my whole family, I have learned there is nothing about my daughter that needs to be fixed. It's the world around her that needs to change.

Thank you.