Did you know that children with a sibling with chronic illness are at a greater risk than average for developing anxiety? Did you know that they often put a positive spin their experiences in childhood by going into a career field somewhat related to their sibling’s disability?
When people talk about CHD or really any type of chronic illness or disability, there tends to be a focus on the parents of the child, and how they handle and cope with the disease or disability. They’re the ones who are doing the daily care, the ones who have sat vigil at hospital bedsides, and the ones who know as much medical jargon as medical professionals do. They are the ones that we see on the forefront, facing the condition head on and pushing through out of pure love for their child – as parents do. But what about the siblings? What about the brothers and the sisters who are simply born into a world that revolves around someone else’s needs? What about the sisters and the brothers who have to grow up in a world where nothing about their sibling is normal or typical? What about them?
My sister was born into my chaos. And my brother was born into a settled down version. They grew up with me being weaker, slower, and often out of breath. They are used to me having to stop. Having to sleep. Having to take a trip to the doctor. They have seen my mom get more worried about my cough than theirs, and my dad be even more protective over me than them. They have seen the pill bottles and the wires and the cords. They have seen the blue lips and the gasps for air. They have witnessed the irritability and the tears.
And never, not once, not ever – have they held it against me. Not for a second. Instead, they’ve protected me. Put me first. Told other people to give me space and explained why I needed it. They have stopped what they were doing so I could try and keep up, and altered their plans so I could be included. They’ve taken the shorter path or the less strenuous hike. They’ve chosen a different activity or simpler game. They’ve made sure I had water, planned nap time, or simply a time to rest. They’ve been been beyond considerate and incredibly kind without even having to be asked. They have made incredible sacrifices on my behalf without even thinking twice.
Growing up I used to think I was the only one in the world who knew what it was like to be me. I thought there couldn’t possibly be anyone who understood. But as I’ve grown into adulthood I’ve come to realize that there were two people who very much did. One summer I got so sick I couldn’t get up off the couch. I was shaking from the chills so badly that my mom put three or four blankets on me and I was still shivering. My sister; without batting an eyelash, climbed on top of me and the blankets and lay her body across mine. Soon after the shaking stopped. And we laid there, her on top of me and my layers of blankets, watching TV until I was warm again. My brother had an assignment in school once, to write about a person who they admired. In a few short sentences he wrote the most beautiful paragraph about his sister who faced a serious heart condition but still lived a full life. He shared it with his class – poor elementary school kids who had no idea what a congenital heart defect was (but you can bet he absolutely let them all know.) Just a few weekends ago I went camping with some friends, and we had planned to go on a hike. When reading about the trails, my brother and sister were the ones making sure that the trail we picked was one that I could do too. And as we hiked, they checked on me the whole way up, and made sure we all stopped when I needed to catch my breath.
It would have been easy for my brother and sister to resent me. It would have been easy for my brother and sister to be jealous. It would have been easy for my brother and sister to roll their eyes and call me dramatic. It would have been easy for my brother and sister to get annoyed and frustrated with me. And they would have every right. But they didn’t. And they don’t. My CHD has affected them almost as much as it has affected me. It has made them into the people that they are, and determined their perspective on people who don’t fit into our standards of “normal”. I am forever grateful for their patience and their compassion towards me and for me.
My Yellie and My Thomas,
You make me proudest big sister in the whole universe. I wish I had the words to truly express how much I love and appreciate you. Your sacrifices and kindness have never gone unnoticed. I love you with every single part of my half of a heart.
Love Always, Emmy-sissy
This blog originally appeared on Emily D’Ambrosio’s blog, “The Girl with Half a Heart.”