His Difference, My Weakness

Just looking at this blank document to begin writing about having a child with a difference makes my heart start racing. 

I've always viewed families of children with disabilities with such respect. They seem to just get on with life. They appear happy, carefree, like this is just how their life was meant to be and they’re cool with it.

My son looks different from other children but in a very minor way. He doesn’t have a disability. I wouldn’t even call it a disorder or a deformity, and he isn’t suffering in any way. But I am. 

It takes a lot to actually admit that. Let’s face it, we all want to blend in, to pretend everything is normal and that we’re fine. When really. We’re not. My heart rate racing up from 60 to 92 when I opened this blank page is a clear indicator of that. 

Let me explain.

Two years ago, when my son was a couple of days old, we noticed that his left eye wasn’t opening as much as his right. 

“Probably an infection”

“It’s definitely a blocked tear duct”

“Oh it might just be because he came out with his arm over his face”

That’s what the doctors and nurses said, and I believed it. “It’ll be normal in a few days,” I said to myself, with a hint of doubt itching at the back of my mind. 

Well, fast forward a few weeks and the doctors weren’t so sure. They referred us to a pediatric ophthalmologist and he was diagnosed with Congenital Ptosis. It means that his upper eyelid muscle didn’t develop properly and so it droops lower than his “normal” eyelid. 

Honestly, at the time I was okay. Sure, it meant more visits to the ophthalmologist to check his vision was developing correctly, but it didn’t feel much different from the endless doctor visits you have to make with a newborn anyway. I was fine, he was fine, everything was gonna be okay. 

A few months later, they made the recommendation that we start patching his good eye. Initially for twenty minutes, but after a few months, it was recommended to do an hour a day. It was (and still is) an inconvenience. It’s something you don’t need to have on your plate while trying to work full time and take care of a baby. I always thought to myself - “someone else has it harder, you’re fine.”

In hindsight, those were the easier days. He was so tiny that people barely noticed his eye. It was rare that we would get a comment. And he was so young that the thought of him understanding he was different from his peers was so far off that I didn’t need to give it a second thought. 

But now, here we are. 

He just turned two and we are creeping closer to the day that he notices that he looks different and to the day that he gets upset when someone points it out. 

There have now been multiple occasions when people commented to my husband and me, both adults and children. I understand that most people either make a comment because they don’t know what to say, or because they genuinely think he was punched in the eye, stung by a bee, or that he’s particularly tired. But it hurts. It really hurts. 

Not because I want an aesthetically symmetrically perfect-looking son. I think he is gorgeous the way he is. But because I want him to always be happy, to always feel loved, to fit in, not to be excluded or pointed out that he’s different. Isn’t that what all parents want?

I’m terrified of the day that someone says “what’s wrong with your eye?” and he has to answer. 

Having a child with a physical and noticeable difference is HARD. 

I am not always okay about it. 

I cry. 

I feel angry. 

I wish I could take it away from him. 

And, you know what? That’s okay. 

The families that have children with disabilities, deformities, conditions, syndromes, and medical issues - they’re not always okay either. They might look it, they might seem to be getting on with life, seem to be happy and carefree. 

But...behind closed doors, they cry, they’re angry. They wish they could give up their perfectly healthy body to their child, and take their problem for them so that their child doesn’t have to deal with it. They all do. Because it can be so hard to be different. 

Our society is getting a little better at this. I have read children’s books about differences - multicultural books, children with different types of families, children with missing limbs, children in a wheelchair.

We are getting better about educating our children to accept everyone. That looks don’t matter. It’s what’s inside that counts. 

But let’s face it, kids can be mean. Those books don’t stop that one uninformed or unkind kid from commenting. It doesn’t stop that one uneducated man from laughing about it and asking if he’s on drugs or drunk. 

If you have a child with a difference, I’m not here to try to take any of the pain away. I’m not concluding this with an answer, with a solution to your feelings, or with a way to fix it. 

I’m here in solidarity. I’m here to say, it’s okay to not be okay. It’s okay to be upset and angry. It’s okay to loathe anybody who comments on your child. It’s okay to want to punch them in the throat and drop kick them to the floor.

I happen to think my child is beautiful, inside and out. I’m sure you feel the same about yours. No matter how small or how big their difference is. 

To you, they are perfect. 

I know that when the time comes, I will teach my son that he was born with a little difference from the way other people’s eyes are. I’ll teach him that everybody in the world looks different and it would be a very boring world if we all looked the same. I’ll teach him the correct and scientific name for what he has so that he can answer people correctly when they ask about it. 

But most of all, I will teach him that his inner strength, incredible personality, and kindness are the most important things about him, not the way he looks. 

He will be okay. He will be more than okay. Often these things are much harder on the parents. It’s the fear of what’s to come. It’s the anxiety about what might happen that eats us alive. 

Most days I barely notice he is different. But the days that someone else notices, make all the other days fade into the distance. They are the big days, the painful days, the days I wish I could erase from my memory. 

But I can’t, so I let them wash over me, I let the sadness overcome me. I give myself a free pass to have a cry in the evening when he’s gone to bed. 

And the next day I pick myself back up and I notice even more than usual, what an incredible little human he is. 

I will say it again, I have so much respect for all of the people who have a child with a difference. Whether it’s mental or physical. You know you are doing the best for your child. You know they will be okay because you are guiding them with love, respect, and kindness. 

Just give yourself a break on the hard days, and the next day, pick yourself back up and be grateful for all the wonderful and unique things about them. Because every single child is amazing. And you are doing an amazing job.