The Worst.

This past weekend, I got my heart ripped out of my chest and stomped on by my 11 year old son. I’ve written about him before (About A Boy). He was born with visual impairments (including microphthalmia, which means one of his eyes is visually smaller than the other) and in the time since his birth, we have also realized learning disabilities, processing disorders, autistic tendencies and ADHD. It is not easy to be my son.

The worst.

Despite all of these adversities, all of these struggles, he was blessed with a wonderful little personality. He is a happy kid, always smiling. Out of my children, the other two being girls, he is easily my most sensitive and caring. Every day, he will ask me, my husband and our girls how our days were — and he honestly cares. He loves giving out hugs, with one of his former teachers saying he had a knack for knowing when she really needed one.

But, as with any kid, the one we see at home is different from the one who walks through the school doors. The older he’s gotten, the less smiles we see. His anxiety has ticked up. His frustrations and insecurities regarding his vision and the issues that subsequently stem from them rear their ugly heads far too frequently.  This weekend, however, took the cake. An entire bakery’s worth of cakes, actually.

I honestly don’t even remember what brought it on. He was sitting at the breakfast table, complaining about something. (He is not a morning person — much like his mama.) My husband and I took turns trying to talk him down. The next thing we know, he’s shouting “I hate looking in the mirror! WHY did you make me this way?!”

You wanna talk about a sucker punch? I literally felt like someone had punched me, straight in the gut. I felt the air leave my lungs and I spun around before he could see my face crumble. My husband was right there and immediately wrapped his arms around me as I silently sobbed into my hands. I didn’t look at my husband but I’m pretty sure he was trying very hard not to cry as well as he told me that our son didn’t mean it like that and that it’s not my fault.

But it is.

The genes that are responsible for his eye issues? My husband, my son and I were all tested before my son even reached a year old. Those genes come from me. So while I didn’t knowingly give him his eye problems, the genes that caused them came from me. Me. His mom.

Up until this weekend, we never even really spoke much about his visual impairments. They were kind of like the elephant in the room – as he’s gotten older, he has realized that he looks different from the other kids and that he has trouble seeing what other people do, and yet, we still never really discussed it. Great parenting, huh? I don’t know about my husband but for me, I didn’t know what to say.

But when he cried out “I hate looking in the mirror! Why did you make me this way?!”, there was absolutely no way around it.

I told him we were sorry.

I told him that if I could give him my eyes, I would have done it. I shook my head as I remembered my own mother saying something similar to me in regards to my back pain. I was born with spina bifida and while it was corrected in a surgery when I was 4 months old, I am still left with residual back pain and other complications. She would see me wince when I was younger and tell me that if she could take my pain for me, she would. I remember my 8-year-old self thinking that she was insane for wishing she could have the pain instead. Now I get it, because I would take his coloboma, his nystagmus, his microphthalmia, I’d take it all if it meant he could have normal sight.

I told him that the genes were from me, though I never would have chosen to give him these impairments, and that when he feels angry and needs someone to blame, he can blame me. Because it’s true. It’s my fault.

We told him that his emotions are normal and it’s okay to feel sorry for himself and even to feel anger at his situation, but never allow those emotions more than a day. We told him that there are so many people worse off than he is. That even though his sight isn’t perfect, he still has it. His favorite color is orange. Other people have no idea what “orange” is. When he goes to the beach, he can see the ocean. He can see the sand. Some of the other kids that attend the same summer camp are completely blind. They can only imagine the ocean and the sand.

We told him that even people whose bodies are differently-abled can still achieve fantastic things. We told him about Stevie Wonder, who still plays the piano even though he’s totally blind. Beethoven, who wrote beautiful music while deaf. Stephen Hawking, a world-reknown physicist who can’t even move his mouth to speak but whose mind still works and discovers amazing new things about our universe.

We told him that his eyes do not define him and they never will, unless he allows them to. We told him that when people look at him, they don’t see “the kid with the eyes.” They see a sweet, kind, caring kid. (I may have also thrown “ridiculously handsome” in there because, hey, he is.) And right on cue, I came across a paper he had saved from school on which his teachers and classmates had written their favorite things about him. “Sweet.” “Funny.” “Awesome.” “Kind.” “Positive.” That is what people see when they see my boy. As an 11-year-old, he may not understand it now but those are all the adjectives that matter. Those are the adjectives that make his father and I immeasurably proud.

There were tears on Saturday. There is frustration every day. There is sadness some days. But there is also hope and love all the time. Yes, it hurts me to the core of my being to know that my sweet son will have more struggles in life than most people because of anyone I’ve ever known, he deserves them the least. But… things could always be worse.  And despite the struggles, he is surrounded by people – family, teachers, friends at school, friends from church – who have formed an amazing support system for not only him, but his dad and me as well.

He isn’t perfect. (Who is?!)

But he is loved beyond words.

And for that, we are blessed.


About A Boy

aboutaboy-2Not just any boy though. My boy.

In so many ways, my son is just like yours. He’s 8 years old so burps and farts are, like, the funniest things ever. He is obsessed with cars and is the proud owner of hundreds (I’m serious – hundreds) of Matchbox and Hot Wheels die casts. He enjoys tormenting his little sisters. He is teetering on the precipice of knowing it all and realizing his parents know nothing.

My son, who will be 9 later this year, was born with several different visual impairments.

So my son is not like yours.

When he was first diagnosed, the outlook was grim. The pediatric ophthalmologist said our boy might never see. In the blink of an eye, the hopes and dreams I’d spent months (years, if I’m being completely honest) imagining for my child were in jeopardy. I mourned, I did. It might sound silly but I mourned big things, like the death of the plan I’d had all set for my new little family, and I mourned smaller things, like my husband not being able to play catch with his boy. While every parent is apprehensive over the battles that their children will all face one day, I agonized knowing that my son would face those in addition to the ones his impairments would bring him. I was angry. I was sad. I cursed that life wasn’t fair and that my sweet baby boy didn’t deserve all this.

I still feel that way.

But despite the grim prognosis, my boy has flourished. With every expectation he exceeds, my anguish and anxiety dulls little by little. His vision may not be like yours or mine but he sees.

Some people see him and they only see his disability. If I had a penny for every time I’ve heard “poor kid,” I’d be a rich, rich woman. What they don’t realize is what my son’s visual impairments give him. Because of his low vision, my son has the ability to judge someone based solely on one thing – the way they treat him. He doesn’t care if you’re overweight, what color your skin is, what you do for a living or what kind of clothes you wear. If you’re nice to him, you’re allright in his book. His low vision has helped shape my little boy into the person he is – sweet, loving, and able to relate to the most common – and also the most beautiful – core of humanity – the soul.

My son has unknowingly worked his entire life to never let his disabilities define who he is. He’s done so well, in fact, that upon talking to my 5 year old daughter a few weeks ago about how everyone is different, she was floored to learn that her big brother had an actual visible visual issue – never mind the internal ones. She’d never noticed it because she just sees her brother. This epiphany brought me to tears – both in pride for my girl and in shame for myself.

Raising a special needs child is difficult, it really is. You worry for their present and their future. You worry how to provide for your other children. You wonder how you’re going to give them all the care they require. You wonder how this will affect your own future and the future of your family, even your bank account. The doctors’ appointments, the therapist reports, there are a lot and they take up a lot of time. They’re tiring. They’re not always uplifting.

But watching my boy defy the odds every day of his life is a blessing. Watching him connect with a person’s soul is astoundingly beautiful. Seeing him bring a smile to the faces of so many people he meets is amazing. Learning from his sweet soul has inspired me to live more like him.

Judge less, accept more. Imagine if everyone lived like that. The world could do with more people like my son.