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.
No comments:
Post a Comment