My brother Beau has been an inspiration to me since he was born. I can safely say he has done more to shape and sway the direction of my life than any other single person.
Despite the fact that most people may have thought Crouzons Syndrome was a serious handicap, I thought that Beau could do anything I could do. Another (major) surgery at least every year, was a regular part of our childhood, bandages and wires were just something that lasted for a little while. Speech therapists were close friends, teaching Beau to talk and to generally keep up with me, was part of my own school. I learned as I grew up, as I watched Beau grow up that there were things I knew and Beau knew that most people didn’t.
I would learn that it didn’t matter how much you loved someone you couldn’t teach them compassion or empathy… I couldn’t share in a tangible way with someone else exactly what it does to you to have to face these kind of life altering moments over and over. To watch someone survive and overcome, to go through it with them. What it builds in you, what you stand in awe of…
Beau has shown me tenacity, courage, strength, love and the biggest heart to serve. And humor in adversity… No matter what he goes through it’s not been enough to leave him feeling entitled. It leaves him willing to give more of himself. When I spread it all out in front of me, I start to realize that Beau is one of the most selfless people I know, I am fully aware he is not perfect. But most of his choices are about others not himself. If I could learn or even begin to die to my self in the same ways…
I know now that part of the reason for much of his generosity is that he’s way more sensitive to the pain of others than I am. The empathy I have for others suffering doesn’t begin to touch his… Understandably, he’s built that way, he has a high pain tolerance and yet a heightened sensitivity to pain in others. I know he isn’t wanting me to write a speech for him, but I wanted you to know more about who he is so you understand why I know how vital it is for him to be surrounded by people he loves… He is a survivor and an overcomer, his everyday is a miracle that walks around. I know that God has a hand in where Beau is and a purpose for him, that I get to watch.
I also know that when someone is born with a setback like this, the environment they are in largely determines how they develop… Beau was loved, and pushed and challenged and treated so much the same, like there was no difference, nothing he couldn’t do… Until we all believed it.
Which is good… But in these moments as I watch my brother prepare himself for what will be his 27th surgery… As I watch him calmly process the news that he has to have 2 surgeries he wasn’t expecting… As I notice that he’s nervous, older and more aware… I remember.
I remember a little boy who wore a bicycle helmet so it was safe to play, I remember all the types of hearing aids he’s worn his whole life, I remember a lot of pictures of a baby with bandages all over his head, I thought it was cute but most people were scared and he would wake up scared. I remember how he wouldn’t play doctor with me and Josh when we were little cause he didn’t want us to wear the masks and scrubs I got from the hospital after his surgeries. I remember his determination to have music, to make music, to pour himself into music for others. I don’t want to be dramatic or make a spectacle so I won’t elaborate but… This is his reality, this is my reality.
And what I know about this beautiful story that was very traumatic and unbelievable and full of miracles and difficult at times is this – Beaus biggest miracle is the people that he has changed. The lives he has impacted. The people who love him who come together to stand beside him every time we remember that he needs us.
This is a good time for us to remember him and make sure he knows we are all standing beside him.