Hi! I’m Kaylee. I’m an Oklahoma transplant from Buffalo New York, which is a fun conversation starter. I’m married to a tech nerd, have two insanely cute kids, I own a business and a lot of other things I’d love to chat with you about over coffee.
And I was born with a birth defect.
I was one of 1,600 babies that are born with a cleft lip. You may have heard of cleft lips and cleft palates, most likely on Operation Smile brochures or commercials (it’s an incredible organization if you were wondering).
Thankfully, in the U.S., a cleft lip is very fixable. And even in the early 90s, it was fixable. So while my birth was not a life or death situation–it was a big deal.
A Parent’s Point of View
If I were to write a fairy tale about this story (and I won’t), here’s how it might go:
Once upon a time, in a land far, far away, there was a mom and a dad of three older kids. They were expecting their fourth (surprise!) baby. Everything was as normal as you’d expect – I mean, these parents were pros at this point.
Until, after a completely normal pregnancy and normal birth, the baby came out. And let’s just be honest – she looked weird. There was a hole where lips should have been.
Something was wrong.
Two very experienced parents were suddenly thrown into a new world of unfamiliar and scary situations.
Instead of talking about going home and starting life as a family of 6, they had to start talking about surgeries. And not just one surgery, many surgeries that would have to be planned over the next 18 years.
While still dealing with the shock, a mom who had successfully nursed three kids, now had to learn how to feed a baby with a half-formed mouth (and she even learned how to breastfeed, to the doctors’ displeasure).
These parents now had to watch strangers’ reactions when they saw the baby in public. They had to bite their tongues when kids would look at their baby and say, “EW!”
They had to listen to their baby’s hunger cry before surgeries.
They had to sit in the doctor’s office while two plastic surgeons sat in front of them and discussed, in detail, how they were about to take scalpels to this 3-month old baby’s face.
If you’re a parent of a child with a birth defect, I can imagine that you relate to these feelings too well. It feels so heavy. It’s probably too easy to go right back to that awful moment when the news hit you – it’s hard to forget that kind of fear and uncertainty.
But something that felt life-altering for my parents at the time, didn’t actually impact me in any of the ways that truly matter.
A Kid’s Point of View
As a kid, I remember getting surgeries. I remember some very unpleasant details and I was familiar with anesthesia before I started losing teeth (hot tip: NEVER choose bubble gum flavored anesthesia. NEVER.)
But all the surgeries, all the doctor appointments, even all the endless dental work (my personal least favorite part) – it all feels like a minuscule part of who I am. And it always did.
In fact, most days I completely forget about this part of my childhood. I mean, I had to Google “palate” to make sure I was spelling it right.
👉 My life is not plagued by sadness or grieving.
👉 I’m not held back because of the emotional or mental toll of childhood surgeries.
👉 I’m not constantly thinking about how my birth defect affects my life, even though I look a little different.
And I am not traumatized. I know this for absolute-stinking-certain, because I’ve walked through emotional trauma with friends and family – and the pain of needles is nothing in comparison.
Although I do remember the surgeries and the awful, awful anesthesia flavors–I also remember eating a lot of ice cream. I remember getting to watching a lot of TV, getting lots of gifts, and especially getting a lot of attention (and what can I say… I didn’t mind it).
It would be an exaggeration to say that my physical birth defect doesn’t impact me at all…what you go through matters, even if you don’t remember it.
But even though I may have had some more challenges than the average kid – I was always okay. Because emotionally and mentally, I was blessed with an incredibly loving family who didn’t turn my medical issues into something that defined me.
Even though they had their own fears, uncertainties, and frustrations, they never put those things on me. They let me get spoiled when I needed it, stood up for what was best–even when doctors disagreed–and focused on loving me.
Yes, I have a scar and my nose looks different. I also have a fake tooth, and I get to brag that I had braces for longer than anyone else I’ve ever met. Plus, the inverted filter on TikTok doesn’t do me any favors. 🙄
I struggled with my appearance the most as a teenager, but it wasn’t necessarily more or less than other kid. I was surrounded by people that didn’t consider my appearance to be an important element of who I am – so neither do I.
I’m all too aware that many families face much more severe diagnoses than mine did. I’m also well aware that many children aren’t blessed with the loving foundation I received – so if I had to choose all over again, I’d take the childhood surgeries and a funky facial scar any day.
To The Parents of Kids with Medical Challenges
Every birth defect and medical challenge is different, so yours may be much more severe or more mild than mine. But no matter the prognosis, the physical health of your child is only a piece of their story.
And it’s an important piece of your story, too. And in some cases, like mine, it could be a bigger part of your story than it is for your child.
So don’t minimize what you are going through, parents. Don’t forget to take care of yourself physically, emotionally, and mentally.
And don’t minimize the power you have to help your child. You might not feel like you’re doing enough in the moment–but you are.
Even though you’re terrified and uncertain, your love makes a deeper and more permanent impact than a defect ever could.
