When I was just sixteen months old, my beautiful mom gave birth to my little brother, Mikey.
In the third trimester of her pregnancy, after noticing some peculiar issues with the baby, the doctors did some extensive testing and found two genetic defects. When the doctors got together to tell my Mom they told her exactly this:
“After finding these defects and looking at them together, this indicates a bigger issue. You should pray for down syndrome because that’s probably the best you’re going to get, but it very well could be something less compatible with life outside the womb.”
This is word-for word-what the doctors told my young and terrified 24-year-old mother.
And I try to imagine how she felt hearing that, but I cannot fathom the pain that those incredibly blunt sentences caused her.
At first, they believed Mikey had a heart defect coupled with another disorder, but soon realized it was more than that. Mikey was born with cleft lip and cleft palate, serious inner ear issues resulting from his cleft, as well as Peters anomaly.
Peters anomaly is a rare genetic disorder that caused him to be born almost completely blind. Mikey had very little vision in his right eye and no vision in his left eye. However, his left eye didn’t look how most eyes do, instead, his left eye resembled the sky on a very cloudy day.
Between his lip, mouth, and eyes, he didn’t look like what the world defines as “normal.”
I cannot remember a time in my life where I thought Mikey was any different, but the truth was that he looked “different” to the rest of the world. It didn’t matter where we went growing up, someone was always staring at him, and it was one of the most infuriating things to watch.
As a child, teen, and even early on into adulthood, I found myself getting so angry with these people. I would stare right back until they were so uncomfortable they just had to look away, and other times I let my anger get the best of me and walked my determined self right over to let them know exactly what I thought about the way they were staring at my brother.
I grew up watching Mikey have surgery after surgery, too many hospital stays to count and thousands of doctors appointments (some being halfway across the country). I watched him struggle with his self-confidence and his image because although Mikey couldn’t see, he knew people were staring and whispering and he could feel how differently others treated him.
Over the course of his short 21 years, he’s had sixty-one surgeries.
These surgeries have been on his mouth, lips, ears and his eyes, and through all of that, he still lives his life to the fullest. He’s one tough man, but that doesn’t mean that the constant staring doesn’t affect him. These things don’t just apply to my brother, I’m talking about all people who don’t meet our standard definition of “normal,” and are treated like they’re unworthy of love.
Growing up with Mikey as my brother, I felt so many emotions. I was outraged, outraged that people could be so clueless to their insensitivity.
I was heartbroken that people could be so shallow not to see past a physical difference, and more than anything, I felt helpless.
Helpless because I couldn’t be everywhere all the time to protect him, helpless because it was impossible to hear, see and correct every rude stare or ignorant comment made by someone, and I felt like there was nothing I could do to show people how hurtful these things were.
Just because someone looks different doesn’t mean they’re weird or that they are somehow undeserving of an honest friendship. It’s not just Mikey, I’ve noticed this all too often when it comes to others with a physical difference. People, whether they mean to or not, treat them differently and often they are downright mean.
Adults, I’m begging you, teach your kids that not everyone looks the same, teach them that just because someone looks different doesn’t mean they should be made fun of or shunned. When you’re out and about and they say something too loud, don’t shush them and pull them away, answer their questions, teach them not to stare, and teach them that some people look different and that’s okay.
Don’t pity those who don’t look “normal,” because they are stronger than you would ever believe, instead genuinely get to know them just like you would anyone else.
Above all, be a good example.
Show your kids, and other adults, that just because someone looks different, or maybe acts a little differently, doesn’t mean they don’t deserve true kindness, friendship, and love.
To the siblings out there who grew up in a similar situation, I know it can be tough, but don’t let other people’s opinions or actions break your spirit. Don’t ever let another person's unkind words make you feel embarrassed of your siblings. Keep watching out for your siblings, but remember that they are strong too. They’ve gone through so much, that they almost have a built-in tenacity to take on all life throws their way.
I’m thankful that my mom raised Mikey to be strong.
She taught him that just because he was different doesn’t mean he can’t reach for the stars. He may have to work harder than others to achieve certain goals, but that means he will deserve those things that much more. Mikey works hard, he’s one of the funniest people you will ever meet, and he loves people even harder.
I believe everyone has a few heroes in their life, and my little brother will always be a hero of mine.
When you meet someone who looks different, take the time to know them, rather than judge their outside appearance.
Be real and genuine in the way you speak to them and treat them, stand behind them when people make unnecessary comments, and never underestimate their strength and their love for life.
I don’t think I’ll ever be able to “turn off” the desire to fiercely protect my brother from hurtful comments and unwarranted staring, but I can change the way I react, and I can educate those around me on how to act, what questions to ask, and most importantly, that he may not be what the world defines as “normal,” and that’s because he is extraordinary in every aspect.
