This Is What I Learned Growing Up With A Brother With Special Needs

35 years ago, my older brother Kip was born with a very rare genetic disorder called Cornelia de Lange Syndrome. Along with his diagnosis came a plethora of complications.

Kip survives in a world of print he cannot and will never understand. His daily tasks of living take more effort and courage than most of us can even imagine. He faces discrimination and judgment daily. People stare, they whisper. Ultimately, he lives captive in a body that doesn’t work like it should. He is completely aware of his condition, and could likely tell you (in great detail) all of the challenges that he has experienced as a result of an unfortunate chromosomal mishap during conception.

Most of us have enough empathy to agree that Kip has been dealt some very difficult cards. Most of us would also look at the many obstacles and hurdles that he faces, and give up. But not Kip. He’s a fighter. A daily illustration of perseverance. Of strength. Of pure grit and determination. He wakes up each day with hope in his heart, willing to face whatever obstacles life happens to throw his way.

Despite the many difficulties he encounters, he never backs down. He doesn’t succumb to bitterness, nor does he feel sorry for himself. As a matter of fact, in all the years he’s been my brother, I’ve never once heard him complain about the challenges he faces or the hand he’s been dealt. Not once.

Kip is the kind of person who takes money out of his savings account and buys a ticket to accompany you on a flight with your three children so you don’t have to fly alone. He’s the type of person who responds with, “It’s okay, we all have bad days,” when he sees you lose your temper and scream at your kids. When your husband leaves for a week-long work trip, he volunteers to come and stay with you so he can walk your (very nervous) son to and from kindergarten on his first week of school.

He’s the kind of person who would do anything for you, if he thought he might be able to lessen your load. He’s kind, calm, and genuinely helpful. It’s so humbling to witness someone who has everything in the world to be upset about, choose love and kindness above all else.

Now I don’t know about you, but I wouldn’t be able to have this much courage. I would be bitter and angry. Emotions that I’m sure Kip has experienced plenty of, but when push comes to shove, instead of resentment, he chooses strength and compassion. Every. Single. Day.

Talking about my brother and his challenges has not always come easy to me. I am ashamed to admit that when I was a young girl, I used to be embarrassed that Kip was different. I didn’t understand why I couldn’t have a “normal” brother like my friends. I would get frustrated and angry. I was young, self-centered, and could only see how his syndrome impacted me.

As I write, these words are still as venomous and hurtful today as they were 20 years ago. It breaks my heart and shames me, but I also know that these emotions were part of the experience. The process. The teaching.

The thing is, Kip has been teaching me from the very beginning. When I waited for hours every morning while he finished his “routine,” he was teaching me patience. When I yelled at him for not being able to remember the phone message, and he apologized, saying, “I’m sorry, my brain doesn’t work right,” he was teaching me humility. When I watched him approach my cheating high school boyfriend in the middle of the senior hallway and tell him he was a jerk “for making my sister cry,” he was teaching me unconditional love.

Most importantly, his unwillingness to give up, despite assholes like me, is the ultimate lesson on the true meaning of bravery.

I still am not sure how I was lucky enough to be given the opportunity to learn from Kip. Of all the families in this great big world, somehow our family was chosen. And the lessons are humbling. Lessons of strength, tenacity, and persistence.

He’s taught me perspective and to appreciate my abilities and the many things that I have been blessed with. He’s taught me empathy and the importance of valuing every single person’s worth. Above all else, he’s shown me that even in your darkest hour, when you think you can’t take another step forward, you can. I know it’s possible because he does it every single day.

My mom once told me: “It’s easy to be on top and keep your cool, but the true test of character doesn’t happen there. It’s when things don’t go your way, when life throws you a curve ball, that you are given the fleeting opportunity to show this world what you are really made of. Strength and tenacity only increase when tested.”

I’d say this is a pretty good analogy for Kip’s daily life, and if you ask me, he’s got to be pretty darn close to batting 1,000.

When people ask me what motivates me in life, the answer is always him. He’s my driving force, the reason I forge on. Because if he can do it every single day, I have no excuse not to. I’m so damn proud to call him my brother. I’m in awe of his strength and humbled by the way he handles his struggles with such courage and grace.

It’s amazing. Inspiring really. To watch someone thrive, despite the daunting challenges he faces, without ever giving up. He’s making this world a better place, by serving as a constant reminder of what true determination really looks like.