There’s a rush of emotion when you first meet your child. Their skin, perfectly unmarred by the outside world, the tiniest, most precious little fingers and toes. Your whole heart is now a living human being.
You imagine what they will look like when they grow. Will his blonde hair turn brown? Will he have my nose? You imagine all the places you will see, the sleepless nights, the kissed boo-boos, the wobbly first bicycle rides.
Waylon Cole was born a full term, healthy, big baby boy (over 9lbs!) - he was perfect. Everything was going according to plan for those first few months – figuring out breastfeeding, changed schedules, changed diapers etc. but he was such a good baby.
At around 4 months, we began to notice little things that didn’t seem right. He wasn’t quite progressing according to “the charts”. But at his check ups, we were always assured everything was ok. We were trying not to worry much either.
When he was approaching 5 months old, we started to notice these strange little episodes where when he woke from a nap, his shoulders would scrunch up, one eye would go crossed briefly and he’d looked scared. At that point he stopped making progress developmentally. He wasn’t making eye contact, tracking objects, never smiled, and cried all the time- which wasn’t like him. It was heartbreaking.
We took Waylon to doctors, chiropractors, and naturopaths trying to get answers. We were told he’s probably having tummy issues, he might have strabismus (cross eyes), and maybe the slight development delay was because of a tight neck muscle. We were assured though, it’s nothing serious.
We knew they were missing something and we couldn’t give up. So, within a couple weeks, I spontaneously decided to take him to Phoenix Children’s ER. I walked in and said “I think my child is having seizures.” I made that up. I really just wanted him to see a neurologist.
As I started describing his symptoms, they actually said it does sound like an unusual seizure condition, and he would need to be admitted to the hospital for an immediate MRI and EEG.
I had no idea what this meant or how serious it could be. I assumed we’d go through the tests, get the treatment he needed and he’d be back on track.
I couldn’t have anticipated the magnitude of what I would find out over the next 12 hours.
Turns out, the EEG confirmed those little episodes he was having were called Infantile Spasms, which may sound innocent but it’s actually a devastating form of epilepsy that damages the brain and causes developmental regression. They said he needed to be treated immediately with heavy dose steroids and the MRI that evening would give them a better idea what is causing the condition.
The following morning, a doctor came in with his MRI results. It was then we learned the worst of it. The infantile spasms were a symptom of a very unusual brain malformation. There was not a clear diagnosis. They said “we can tell you, he will never be normal.”
I was shocked and confused. I didn’t even know what to say or what to ask. They said his brain resembled that of a patient with muscular dystrophy but he did not present with symptoms to match. They also said this had to be a genetic issue and he would need to undergo further testing.
I had no experience with serious medical or genetic issues. I’m a healthy person. I had a healthy pregnancy, I did everything right, all the tests were normal. I have a big healthy family. When I was growing up we took vitamin C when we were sick. We only saw a doctor if we had a physical injury. How could this be genetics?
After a 5 day hospital stay, we were sent home, shattered, confused, and still in complete shock. We had no idea of what the future held for our child. We had a bunch of medication, a booklet of discharge paperwork, and a resource packet for “Raising Special Kids.”
Over the coming months, initial genetic tests were done and still did not provide a clear answer or diagnosis. We were then given the opportunity to participate in a genetic research study for rare childhood disorders conducted by TGEN that would give us access to more advanced genetic testing and further investigation. Even though we didn’t get an answer right away, the gene information was entered in a worldwide database.
It was only recently confirmed his condition was caused by a rare chromosomal abnormality. So far, they found eight other children in the world with the same gene mutation and similar enough symptoms. No name has been ascribed to it yet.
So, here we are 3 years later. We've been through so much and there’s still a lot we don’t know about Waylon. It's a roller coaster but we try to stay present and keep hope for the future. Right now, he has global developmental delay, epilepsy, cortical visual impairment, and several other diagnoses. He doesn’t walk on his own or talk or feed himself, yet.
I’d be lying if I said it’s been easy or is getting much easier. Being a regular kid's mom is a full time job but when you have a special needs child, it requires overtime. As a primary caregiver for a special needs child, your career potential becomes limited. With so many people like us who depended on 2 incomes, finances become limited as well. Even with the best insurance, there are increased costs and money is the last thing you want to worry about when your child truly needs you caring and advocating for them. I continue to work from home because money is needed, but it's been so important that I put my child first, especially in these early years where his development is crucial. We are trying to treat daily seizures, sensory issues, juggling multiple therapies, adaptive equipment, mobility issues, doctors appointments, medications, supplements, special schooling, special diets etc.
It's been a game changer to say the least.
There is a bright side and this is really what's most important. I still feel lucky every single day to be Waylon's mom. He is also making progress, just at his own speed. He’s healthy, his weight and height are at the top of the charts, he’s extremely handsome, opinionated and has a magical connection with music. He loves sharing a good laugh and his happens to be the best sound you’ll ever hear.
This is our new normal. Through all the dark things we face, there is light. There is still a lot to be grateful for.
I’m not sharing our story for pity and I don’t want praise for loving my child. Waylon is such a gift, he is not a burden. I’m sharing because I know living outside the “norm” can feel isolating and letting go of the expectations and ideals we’re programmed with can be difficult. I know there are others out there experiencing the same challenges. For now, I hope hearing our story makes someone else feel less alone in theirs.
I also hope that we can create a platform the gives us the opportunity and funding to make life a little easier for other parents and kids with special needs. I want to start locally be advocating for more adaptive playground equipment in public parks, and more universal changes places. Eventually, I'd like to create ways to lessen the financial stress on other special needs parents.
Like any other mom, I want Waylon to be well cared for, I want him to know he’s important, but, I want Waylon Cole Brand to represent the importance each of us have in the world, regardless of circumstances.
Lisa Duffield, founder of Waylon Cole Brand