Ignorance IS Bliss

A few days ago the kids and I enjoyed the most wonderful morning at the local public pool. It's a giant facility complete with multiple pools, splash pad, water slides, river pool and more. We met up with some friends and a few hundred strangers joined us too. Typically I run the opposite direction from busy places, but when it comes to a swimming experience like this, I just had to try it out.

Swimming pools are notorious for exposing our insecurities and differences. And it's funny, but this didn't occur to me until we got home. There we were in the middle of a few hundred people and I didn't think about Ryan's difference. Or what others may or may not be thinking. As far as I saw, there weren't any stares. Fingers weren't pointed in our direction. I didn't hear any snickers or name calling. All I saw was my son, his sister and their friends having a blast together. And all I heard was the kids' playful banter and myself catching up with friends. And yet, this picture perfect experience may not have happened at all. I guess it is true ... Ignorance IS bliss.

It's a phrase that I've heard my entire life. Most people say it in passing. But for me, I've come to believe that it's the reason for my happiness. Ryan has dwarfism. And that means he looks quite different than his peers. For the past five years, his difference hasn't been dramatically evident. But now that he is far out of the baby stage, he stands out more and more.

When I look at Ryan I don't see anything different. I just see my little boy. I see Ryan. Maybe that's part of my ignorance. After all, Ryan's small size is our normal. I often forget that he is a little person. Our normal is a happy place. Ryan is loved for who he is. And he loves himself for who he is. Just like the normal that many families experience. We embrace who we are and venture outside of our home with loads of love and support behind us.

But outside of our home there is no denying that Ryan is different. That our normal isn't typical for most. And because of his rare condition, there can be stares. Name calling. Finger pointing. Laughing. Everything I've feared from the moment he was diagnosed. But what I didn't count on was my ignorance. Who would have thought I would be so happy to be completely and totally oblivious? But I am. The big mean world has no affect on me. Or Ryan. And it's not because the stares and comments aren't coming in our direction. It's because we haven't noticed. We are out doing our thing. For now, our happy protective normal travels with us. We don't worry about what others are thinking. So we don't see anything to get upset about.

Of course sometimes I see looks and glances in our direction. But my ignorance only glorifies these occurrences. I see the looks turn into smiles and I take them as compliments. After all, they could be looking at us because they like what they see. And I refuse to let myself believe otherwise. What's the point? I'm going to enjoy the "not knowing". Making someone's glance into an insult causes hurt and pain for us. And it may not even be accurate. I'm choosing ignorance over anger and tears.

As Ryan and his peers are growing up, I'm starting to hear more and more heart-breaking stories from our fellow "Little Big" friends. There's cruel pointing. And name calling. Directly into a child's face. It angers and frustrates me how some kids and adults can be when it comes to a person with a disability. I'm sure my ignorance is only temporary and that we will soon experience what our dear friends have. But because I've enjoyed my ignorant bliss for so long now, I'm determined to learn from it. To utilize it to make these experiences more bearable. And to make them insignificant.

As my ignorance fades and the world doesn't allow us to miss the cruel and hurt, I need to look back at my ignorant bliss as a reminder. When wounding words and gestures are directly in our face, I need to choose bliss over sadness. I need to remember that there are nasty people in the world who for whatever reason, feel the need to cut others with their words. But the words won't cut deep if we don't let them. I need to remember that I have a choice. I can choose the hurt or I can choose bliss. If I am able to render the sharp angry words insignificant, then they can't hurt us as much. These experiences will always draw some blood and tears. It's impossible to walk away unscathed from such horrible experiences, but it is possible to move on and to choose happiness. To choose ignorant bliss.

You may worry that choosing ignorance may result in lost chances to educate. And to put the nasty in their place. But despite lacking in drama, ignorance still makes quite a statement. Actions speak louder than words. By choosing bliss, hurtful people don't matter. The cruel words are lost and we carry on with confidence. Ryan is small, but he's not a joke. And though he's small in size, he's larger than life when it comes to everything that matters. Just watch - glance in our direction. Stare at us. It's ok. We have something to show you.

The Sibling Struggle

Having a child is a challenge. And if that child has a genetic condition it's tough. And when there's a sibling in the mix it's more difficult than I could have ever imagined. My life is complicated. I have one child with a genetic condition and one that doesn't.

The moment Ryan was diagnosed with dwarfism I knew that our path in life was going to be rough at times. Having a child with a condition means that there is always something to worry about. We have specialist visits, tests and procedures constantly. And on top of that there is a long list of complications to watch out for. Some are major and quite scary. And yet, despite all of this, I've come to find that in many ways I worry more when it comes to my daughter.

For the most part, my children don't have dramatically different needs. They are close in age and share many of the same interests. At five and almost four years old, they even share friends. But regardless of this, I have found it to be a struggle to find the right balance for my children. I never could have guessed that I would struggle with this. The balance of attention seems so straight-forward. I  have two children. So there isn't a middle child to worry about. And I have a boy a girl. No direct comparison possible. Easy right? I sure thought so. But boy was I wrong. Adding a genetic condition to the mix changes everything.

Having dwarfism made the first year a rough one for my son. And even more so for my husband and I. But, if you asked me when I was pregnant with my daughter, I would have told you that it would be a simple task to share affection for my two children. My heart is giant. There's plenty of love and attention to give! But it's just not that simple.

Watching your child suffer and fight through medical tests and procedures isn't just tough. It's life altering. I'm a different person than I was before I had my son. My son gets through medical challenges, faces social confrontations, and is constantly adapting to keep up with peers. And he does it with a smile. Before he could speak, he taught me more about life than I could have imagined. And he continues to do so today. Having a child with a genetic condition creates a bond stronger than strong. And this is why I struggle.

I don't favor my son. I'm certain of that. But the worry is relentless. Does she think he's my favorite? Does she feel loved and valued? Do I hug her enough? I may not love her less than my son, but I am guilty of expecting a lot from her. Before she was even born I wished her to be strong and confident. And she is. And then some. She not only rises to meet my expectations, but she always surpasses them. She's fiercely independent and self-teaches herself almost everything. Perhaps this independence that contrasts with my son's meek and timid demeanor is part of my challenge. My daughter never seems to need attention. But I constantly worry. Am I missing her signals? Is her typical three-year old behavior really a cry for attention and love? I fear that I'm letting her down.

The sibling of a child with a genetic condition has it rough. In many ways my daughter has it tougher than her brother. At a young age she's expected to understand and accept. And to help others do the same. She has a life that tends to revolve around her brother's needs. And she's on the sidelines watching him endure tests and procedures. No matter how well I protect her, she's experiencing stress. She sees the worry and fear in my eyes. And the relief and love in them when it's all over. And she waits. And I wonder if she's waiting for her turn when my eyes are on her.

Siblings don't sign up to be the best friend and protector of their challenged brothers and sisters. But they take it all on without a second thought. Ask my daughter who her best friend is. She won't blink an eye and she'll tell her that it's her big brother Ryan. The bond that they share is truly one of a kind. And it's stronger than steel.

Siblings are real-life superheros. My daughter stands strong and proud next to her brother. She's happy and fun. And she's a badass. My sweet Super Girl doesn't mess around. She's tougher than tough and she's wise beyond her years. And with this super power, she also calms my anxiety. She's not only my son's superhero, but she's my hero too.

Perhaps we were chosen to be a family made complete with a child with dwarfism. Or maybe we just got lucky. Because despite all of my worry, my daughter was born to be a superhero. I'm always going to work on watching for her needs, since even superheros have needs. But I know that as long as I value my Super Girl and her power, she's going to be ok.