Erica’s Mom & Dad
Destined to share a life together!
Catherine – Erica’s Big Sister
Our daughter, Catherine—known to us as Cat—was a huge part of Erica’s daily life and care. From an early age, she helped in countless ways: changing diapers, assisting with feedings, babysitting, and simply being present.
More than anything, Catherine brought joy.
She had a natural way of keeping Erica engaged, whether through playtime, gentle interaction, or shared routines. One of their favorite activities was going for rides on the new seven-speed tricycle, with Catherine proudly steering and Erica soaking in the experience. Those moments were full of laughter, motion, and connection.
Catherine was a bright, happy spark in our family. Her bond with Erica was effortless and genuine—rooted not in obligation, but in love. These photos capture that spirit: two sisters sharing time, movement, and happiness in ways that didn’t need words.
Here are a few images we recently rediscovered that convey that joy better than we ever could in writing.
Cat was not only Erica’s hero she was (and still is) my Princess.
Jared – Good Times With Erica’s Big Brother
Jared, our son, was and still is an amazing, handsome young man. Here are some pictures of our favorite times together!
So many beautiful memories.
Runaway Wheelchair
December 7, 2019 Last updated :May 8, 2021 
Speaking to Erica like a “normal” person was a good thing to do but sometimes lead to unexpected results, like a runaway wheelchair!
On one sunny afternoon at Sesame Place, in Philadelphia, PA, Erica was told to “sit still for a moment, Mommy needs to tie Jared’s shoe.” Simple enough but Erica did not hesitate to “run away” very quickly down a hill!
Stranger to the Rescue!
Luckily, a nice man caught her in the midst of her escape and exclaimed, “Does this kid belong to you?”
Moral of the story: There are heroic people in the world but importantly, after telling Erica not to go anywhere one must remember to set the parking brake!
The takeaway here is to not be afraid to take your disabled child out in public. Yes, it can be difficult with all the apparatus you may have to lug along, not to mention the glaring eyes of disapproving strangers, but shrug it off Buttercup. You and your kid(s) deserve a well-earned outing and it builds character!
Sesame Place
Did you know: Sesame Place has become the first theme park in the world to become a Certified Autism Center, as designated by the International Board of Credentialing and Continuing Education Standards. Read more about Sesame Place.
https://sesameplace.com/philadelphia/CategoriesAdventures
A Personal Narrative on Lissencephaly
Our daughter, Catherine, wrote this and read it to her class at St. Mark’s School so they could understand Lissencephaly. We couldn’t have been anymore proud!
by Catherine Bayliss
10/18/98
Do you believe in angels? Well, maybe you should read this story, even if you do believe. There is an angel that has changed my life for all time.
At first, my life was happy. I didn’t need to worry about things. In fact, my whole family didn’t need to worry. I also didn’t think disabled people were worth appreciating, liking, visiting, talking to, or loving. I also didn’t like being around “different” people. But when she was born, my life wasn’t a happy life I had known before….
On May 3, 1992, I woke up to use the throne. It was 6:30 AM. I went back to bed but couldn’t sleep. I went downstairs. To my surprise, Aunt Gabby was sleeping on the couch. I sauntered into the kitchen to ask Mommy why Aunt Gabby was here when it hit me.
For the past nine months, my mom had been growing a belly. About seven months ago she told me she was going to have a baby. My aunt was to come down from New Jersey when my mom needed to go to St. Agnes Hospital. My sister, Erica, had arrived.
For the first five months, Erica was a quiet baby. She did not cry. Then mommy started to notice other things about her. Erica always threw up her food even hours after she would eat. She also seemed to have “fits” where her legs and arms would pull in towards her body and shake and her eyes looked funny and she would clench her teeth shut. We also noticed that Erica never looked at people. Mommy started to say that something was wrong with Erica. Erica was not acting as a normal baby should. When Erica was five months old Mommy told the doctors to find out what was wrong with her. The doctors decided to put Erica in the hospital and do tests on her. When the doctors did an x-ray of her brain they found out that Erica had Lissencephaly and Polymicrogyria.
Lissencephaly is when the brain is smooth like an upside-down bowl. Either the whole or part of the brain can be affected. Polymicrogyria is when the indentations and crevices in the brain are so small and compact that it is like there are none there. When Mommy came home to tell us about Erica and what was wrong it shocked me because I was disinterested in the disabled. I knew my life would never be the same. Erica was always going to be like a baby. She would need everything done for her for the rest of her life.
It was difficult to adjust to this new life. I did not have a sister that would grow up and play with me. I would always have a “baby” sister. Our life seemed to change. Sometimes it would be a slow change, like adjusting to packing a lot of supplies to help take care of Erica when we went anywhere. Sometimes the change would be quick, like coming home from school and seeing a wheelchair sitting in the kitchen
At 5 ½ months old Erica started a school-like program called Infants and Toddlers Program. This is a program that helps children who have some type of disability. At age 3 she started preschool, half-day in a special school. At 5 yr. old she started kindergarten, full day at the same school.
When Erica was two she had to go back to the hospital because she was losing weight too quickly. She lost 12 pounds in one week. Erica was not keeping any food down. The doctors decided to put a tube in her tummy to feed her and do an operation called a Nissan flundapicaton. This is when the doctors raise the stomach up into the esophagus. Then they tighten the stomach muscles up around the opening so that food can not go back out. We got a new machine in our house. This was a Kangaroo Pump. This pump feeds Erica through her tummy tube during the night when she sleeps.
At age three, about four weeks, before Christmas, Erica caused mommy’s “cookie crisis”. Jared and I came home from school to find out that Erica was in the hospital. Apparently, mommy had been making Christmas cookies and had a sudden feeling to check on Erica. She had turned blue and was in a seizure. When Erica goes into a seizure she locks her jaws and joints. She will sometimes stop breathing during this time. Erica has seizures a lot but this was the worst she has ever had. Mommy rushed her to the hospital.
The doctors said that Erica’s lungs collapsed on her and had to be put on a machine to breathe for her. She didn’t come home until two weeks later. This was the first time I saw her since the “crisis”.
I don’t like to remember this because we almost lost my sister. Mommy does not make Christmas cookies anymore. We buy them from the store now.
When Erica was four years old we all started to notice that she startled herself when she was sleeping. Erica also would stop breathing when she slept. Mommy had to take her for more tests. The doctors did three sleep studies on Erica. For the tests, Mommy and Erica had to spend the night at a lab. The doctors attached a bunch of wires to Erica’s head and body. These wires were connected to a computer that recorded what happens when Erica slept. We found out that Erica would stop breathing during the night for at least 267 times. And 80 of those times she would stop breathing for over a minute. The doctors said that Erica needed a new machine. Now she sleeps with a bi-pap machine. This machine blows air into her and releases the air at a set number of times every minute. This helps to make sure that Erica does not stop breathing when she is sleeping.
We now will joke sometimes that Erica is slowly turning our house into our own personal medical center. We are slowly getting all the machines.
During Erica’s life, she has earned the title of God’s little angel. My family believes this is true.
Erica may not be with us for a long lifetime, but this angel has changed me in the short time she has been with our family. She has changed my views about people with disabilities. They are worth our appreciation and more.
All people, no matter what their differences are, can teach us things worthwhile to learn. Erica has taught me that even if you can not speak, walk or learn things as we can, you can still feel love.
Fun Halloween Campouts
Even with all of her issues, Erica was happy nearly all of the time, especially when on a Halloween Campout.
1999 Halloween Campout
Here we are at Yogi Bear Campground near Hagerstown, MD. This year Erica went as The Great Pumpkin being peddled round by me as some kind of hippy dude.
Camping in Style
Another reason Erica liked to “camp-out” is that we also packed a recliner for her! How many kids camp with their own recliner?
Archie, the Helpful Dog
December 2, 2019 Last updated :January 25, 2026
This story is easier to laugh about now. At the time, it very much was not.
About a year after moving to our new home in the country, we found ourselves missing the companionship of dogs. Then, one day, a very large dog began wandering through our yard. He kept coming back. No collar. No posted signs. No one is looking for him.
Eventually, I did what any sensible person would do.
I let him into the house.
He was big, soft, and impossibly friendly. Everyone took to him immediately. We assumed—perhaps optimistically—that someone had abandoned him because of his size. We named him Archie, and somehow, he became ours.
Archie and Erica
Archie was an incredible dog. From the start, he seemed instinctively drawn to Erica. He stayed close, watched her carefully, and acted like a self-appointed guardian. It was as though he understood she needed protecting.
Which brings us to the day Archie decided to be helpful.
Enter the Emergency Room
One afternoon, Archie took it upon himself to remove Erica’s G-tube.
For context: a G-tube (gastrostomy tube) is a surgically implanted feeding tube used for individuals who cannot swallow. It allowed Erica to receive nutrition and medication, either through a pump or by syringe. It was essential—and very much supposed to stay where it was.
Archie’s motivation remains unclear. Perhaps he thought it didn’t belong there. Perhaps he believed he was helping. Regardless, I suddenly had a six-year-old child with an open hole in her side, and it was seeping in ways no parent ever wants to see.
Michelle was not home. I called her immediately. Her response was simple and direct:
Go to the emergency room. I’ll meet you there.
A Memorable ER Visit
This marked our first visit to Gettysburg Hospital. Normally, Erica’s care was handled at Carroll County Hospital in Westminster, Maryland, or at Hershey Medical Center. This was new territory.
The ER doctor had a hard time believing my explanation. I assured him—truthfully—that the dog really had pulled the tube out.
Complicating matters further, the emergency room did not have a replacement G-tube.
Fortunately, we did.
Michelle returned home, retrieved one from our extensive supply collection, and brought it back. She then proceeded to show the ER doctor how to insert it.
That part is not an exaggeration.
Saying Goodbye to Archie
Archie was with us for about a year. Sadly, he was struck by a car after chasing a squirrel into the road and later died at the veterinarian’s office.
He was a big dog.
He was a well-meaning dog see.
And for better or worse, he left us with a story we will never forget.
The Dogs Who Shared Our Lives
Before Archie, we had three Shar-Pei dogs in Maryland:
- Pugsly was hit and killed by a car while we were in New Jersey.
- Smoochie was eventually rehomed after becoming aggressive following Pugsly’s loss.
- Sampson was returned to his original owner.
Each of them, in their own way, was part of our family—and part of Erica’s world.
Final Note
Life with Erica was often unpredictable. Even the most well-intentioned help could turn into an emergency. But these moments—chaotic, frightening, and later strangely funny—are part of the full picture.
This was life as it actually happened.
Sadly, a year after walking into Erica’s life, Archie was struck by a car and later died in the Vet’s office. The dumbass chased a squirrel into the road.
The Shar-Pei dogs we had in Maryland were sadly no longer with us for various reasons. Pugsly (left) was hit and killed by a car while in NJ, Smoochie (center) was given up because she became mean for some reason with the loss of Pugsly, and Sampson (left) was returned to his original owner.
Lissencephaly Network Public Group | Facebook
Buckeye Invitational
In 1995, my chorus placed 3rd in the Mid-Atlantic District contest in Ocean City, MD. We earned an invitation to the Buckeye! What an honor.
In 1996, the Heart of Maryland Chorus was invited to participate in the Buckeye Invitational by placing third in the annual Mid-Atlantic District Contest. This mini-convention invites only the 3rd place finishers from each district across the country.
While most members and guests traveled together by charter bus, we chose a different route—we followed along in our camper.
Camping with Erica was already part of our routine, and bringing our own space made the long weekend far more manageable. Familiar schedules and surroundings mattered, and the camper allowed us to keep things comfortable and predictable.
The Buckeye Invitational was an annual barbershop festival and competition hosted each August by the Singing Buckeyes in Columbus. Open to both men and women, the event was designed for choruses and quartets that placed third in their respective district contests—just short of qualifying for International.
The Buckeye Invitational was an annual barbershop festival and competition hosted each August by the Singing Buckeyes in Columbus. Open to both men and women, the event was designed for choruses and quartets that placed third in their respective district contests—just short of qualifying for International.
Its goal was simple and generous: to offer performers a chance to experience the spirit, scale, and camaraderie of an International-level competition without the pressure of advancing. For us, it became a meaningful blend of music, family, and adaptability—another example of finding ways to keep living fully whi
Its goal was simple and generous: to offer performers a chance to experience the spirit, scale, and camaraderie of an International-level competition without the pressure of advancing. For us, it became a meaningful blend of music, family, and adaptability—another example of finding ways to keep living fully while caring for Erica.
The Buckeye Invitational was an annual barbershop festival and competition hosted each August by the Singing Buckeyes in Columbus. Open to both men and women, the event was designed for choruses and quartets that placed third in their respective district contests—just short of qualifying for International.
The Buckeye Invitational was an annual barbershop festival and competition hosted each August by the Singing Buckeyes in Columbus. Open to both men and women, the event was designed for choruses and quartets that placed third in their respective district contests—just short of qualifying for Int
Erica enjoyed Barbershop harmony!
School pics from 1995-1996. The camping trip to Columbus, OH was in August of 1996.
“Buckeye” Information
Buckeye Invitational – Barbershop Wiki
The Singing Buckeyes – Barbershop Chorus
Heart of Maryland – Barbershop Chorus
Camping with a child with Lissencephaly
Heaven’s Special Child Poem
HEAVEN’S VERY SPECIAL CHILD
A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
Her progress may be very slow
Accomplishment she may not show.
And she’ll require extra care
From the folks she meets down there.
She may not run or laugh or play
Her thoughts may seem quite far away
So many times she will be labeled
Different, ‘helpless’ and disabled.”
So, let’s be careful where she’s sent.
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they’ll know the privilege given,
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven’s very special child.
An Exchange Student, and an Open Home
November 1, 2000 Last updated: January 25, 2026
People often called us crazy—usually with a laugh—in disbelief at how full our lives already were. Between caring for Erica, managing daily routines, and juggling family life, we somehow still said yes when the opportunity to host an exchange student for the summer arose.
Anaise joined our family through a summer exchange program from Argentina. She spent the summer months with us, acclimating to life in the United States before the start of the school year. It turned out to be a wonderful experience for everyone involved.
Anaise quickly became part of the family—and she formed a special bond with Erica. Connection didn’t require shared language or explanations. It simply happened.
One of our favorite memories from that summer is a sunny afternoon spent playing miniature golf together.
Navigating a wheelchair around a miniature golf course is no small task—but it made for plenty of laughter and teamwork. It was one of those ordinary moments that stayed with us because of the joy wrapped inside it.
Opening our home that summer reminded us that family is often defined less by circumstance and more by willingness—to welcome, to adapt, and to share life as it is.
Needed Medical Equipment
We had a lot of medical equipment. Friends would joke that our house looked like a hospital, and then suddenly we had a daunting collection of medical supplies and equipment.
We’re Gonna’ Need a Bigger House
We eventually had to relocate to keep up with Erica’s care. In particular, we needed a single-story house because she had become too big to carry up and down the stairs for bathing.
There were also front and back porch stairs to contend with.
In-Home Medical Equipment
- Food pump to feed her via. the G-tube
- Suction machine in case she started gagging on spit or mucus
- Bi-PAP machine for sleeping
- Oxygen concentrator for use with a BiPAP machine
- Nebulizer
Helpful Tip
Always find ways to add a sense of playfulness!
- Wheelchair 4th one. Kids grow fast!
- IV pole
- Hospital bed (real) in her bedroom
- “Hospital bed” (homemade) in the family room
- G-tube kit. Erica was fed through a G-tube, a tube placed in her stomach through which her liquid food (PediaSure) is pumped. The “kit” contains spare parts in case of an emergency.
- Hazardous-waste container box for disposing of items such as syringes.
- Erica was given a Port-A-Cath (in May 2000). This is a special device surgically placed under the skin on her right shoulder. This device provides easy access for blood draws, and, if needed, IVs can be placed there.
Consumables
- Cases of Pedia Sure
- Tons of disposable diapers
- Lots of medications and prescription drugs
- Portable oxygen tanks for her wheelchair
What other home medical equipment do you have to care for your child? Let us know in the comments!
Erica vs. Pneumonia
December 14, 1998 Last updated: August 10, 2024
October 2000 – Only a month into the school year, and Erica missed a week of school Why? She caught pneumonia again, and this time spent three days in the hospital. This made three years in a row that she wound up with pneumonia after going back to school.
This was the 1st time she had pneumonia twice within a month, and we were concerned.
The Onset of Pneumonia
December 2000 – Here we go again. This is the third time this school year with pneumonia and the second stay in the hospital. She didn’t seem as resilient as in the previous years.
To compound matters, Michelle had to drive home to get some of Erica’s needed medical equipment so Erica could spend the night in the hospital!
Now we were better equipped than the hospital!
The next day, Michelle had to drive home again to get some of Erica’s PediaSure because the Hospital didn’t have any! (Note to self: someday this story needs to be told.
She was discharged after a few days, but this time we came home from the hospital with a new toy: an electric bed that goes up and down. You’ve probably guessed, Erica loved this, and so did we, because she slept 200% better.
We were blessed to be equipped to handle Erica’s needs spiritually, emotionally, and physically! Although 2000 was a difficult winter, we couldn’t help but feel it was a sign of things to come.
Psalms 46-5
God is in the midst of her, she shall not be moved; God shall help her, just at the break of dawn.
Miss you, Erica.
Selected essays, short works, and publications: bayliss.com
