On December 17, doctors will remove half of Owen’s brain.
This is Owen.
Owen’s my nephew. He’s three years old and he’s adorable. His favorite things in the world are trains, monkeys and riding on his daddy’s shoulders. If I sat and tried for a week, I couldn’t create a cuter set of favorite things for a three year old boy. But it gets better. Owen loves the outdoors, adores his little sister, and while other kids run around screaming and throwing tantrums, Owen can often be found silently touching a tree trunk, gazing up through the branches, a gentle smile resting softly on his face as he watches the sunlight filter down through the leaves onto the grass beneath his toes. Owen’s a pretty special kid. He has Cerebral Palsy, and in a couple days time he will be undergoing surgery that will hopefully rid him of the seizures that have been racking his little body since he was a year old. In a few days, doctors will remove half of his three year old brain. Owen, you’ve got the heart of a lion in the body of a cub, and buddy, this love bomb’s for you…
Little Man. And I mean that because you’ve never been a boy, have you? Not in this life anyway. From the moment you were born, we all recognized the old soul you were, and I think your mom’s friend put it best when she said that it was our job to simply to help you along your journey in any way that we can. You, Owen, are incredible and have been from the start. I fell in love with you before I even saw your face. Your mere existence and the unrivaled joy that you brought to the people I love was more than enough for me. I was your biggest fan before I even knew who I was cheering for. I wasn’t alone – there were many of us who felt this way.
You have lots of biggest fans, Owen.
In Louise Hay’s book ‘Heal Your Body’, she attributes Cerebral Palsy with a soul’s need to “unite the family in an action of love” and while it’s unfair that a child be tasked with a responsibility like that, that’s exactly what you’ve done. From the very beginning you’ve been the little glow bug that we all circle around. You’ve been a rallying point and a battle cry, a cause and a protest march. You’ve brought a whole community of people closer together, geographically and emotionally, to circle the wagons of love on your bright, little light. What’s happening to you isn’t fair, but sometimes I think that you’re the only one that doesn’t realize that, Owen. You’re too busy living to worry about fairness and in that, you inspire us all.
It’s not fair that you can’t play on the high barstools in the kitchen because we’re all too afraid that you’ll have a seizure and fall off again. It’s not fair that you had to try out a dozen different medications – pills that wreaked havoc on your tiny system, drugs that made you sleepy, or crazy, or both, only to find out the hard way that none of them were really working at all. It’s not fair that you’re three years old and yet you already hate hospitals because they mean pricks from strangers with “ouchy needles” and lots of uncomfortable wires and machines being hooked up to your body.
None of this is fair, Owen. It’s not evenly remotely fair, and yet I’ve regularly watched a seizure take you to the ground mid-play, right in the middle of a game, only to see you come-to a few seconds later, ready to keep on playing, ready to go at it again.
So many little bumps and bruises on your head, Owen, but always a big smile on your face. If only we could follow your lead a bit more often. So many times I’ve let myself down thinking about the small stresses of everyday life that trouble me. Boys, taxes, my weight, my future. Death by a thousand voluntary papercuts. And then I see you, Little Man, a giant smile on your face and a fresh bruise on the side of your noggin, and I am made whole again. I am grounded and I am given the fresh and appropriate perspective I need to get up and get back to playing again.
Traditionally it’s the adults that are supposed to teach the children – how to live, how to play, how to survive – but something tells me that you’re here to teach us all much, much more than we could ever offer you. Thanks for picking us, Buggy. We love you so, so much.
Actually, let’s talk about love for a moment. Love’s a big deal, Owen. You’re only three, but you get it. I don’t have to tell you what love is. You know that love’s when your mom gives your dad a kiss, or when Grandma comes over and makes you a sandwich, or when your aunt quietly takes your soft hand in hers and sits and stares at you in awe, tears filling her eyes with splendorous wonder. But there are bigger, stronger, more beautiful examples of love, and they’re already sprinkled all over your existence.
This is what love is, Owen: Love is when your best buddy and your baby sister shave their heads because they want you to be okay with you shaving yours. Love is sacrifice.
How about another example: Love is when you’re about to have half of your brain taken out of your skull, a radical surgery of last resort to hopefully offer you the best life possible, and even though your mom is terrified for you, for her, for her family and her future, and even though she tries so fucking hard to hide the fact that sometimes she cries herself to sleep, and even though the thought of losing you haunts her for hours some days and takes her to a dark place that she’d only previously read about in books, a place she never hoped to see but a place that she now feels comfortable in visiting, a peaceful darkness that feels like home, she is also strong, and she is fierce, and she is gracious, and she has never been more unbelievably beautiful than when she shaves her head, too, and then holds you in her arms, because that’s what she does and that’s who she is. Love takes courage, Owen, and you were raised by one of the bravest people I know, and for that, and for many other reasons, you are blessed.
Though it doesn’t seem like it now, just days before this crazy, unbelievable surgery, you are one lucky kid, Owen, and you will be okay.
It will be okay.
How do I know?
Because there can be no other way, my boy. It’s hard and it’s stressful and nobody in their right mind would ever choose this path voluntarily, and although we all certainly wish that this wasn’t the route we had to take, take it we shall, together, arm in arm, hand in hand, and we’ll be okay.
It will be okay.
I know, Owen. Your life has been hard. Really hard. I don’t know anybody that would have chosen to live your life, but that’s okay. There’s not a lot of people who would ever choose struggle or pain or sorrow. But that’s their loss, not their gain, for as you are most certainly aware, hardship does not reduce life, it creates it. Love is pain, and from the strife and struggles comes beauty and blessings. Challenges are also blessings, buddy, for all of the amazing lessons and growth that they create. I think that we can all agree that when it comes to challenges, you are fully blessed. For a three year old kid, you know more about struggle than most grown men and have learned more about love than most daydreaming poets.
And your dad, Owen. Wow. I am completely in awe of that guy every… single… day. Even though he sometimes thinks he’s weak, or inadequate, or not doing enough for you, for her, for his family, I promise you this, Owen: He’s wrong. He gets up every damn morning filled with such an endless love, patience and determination overflowing from his soul that it melts my heart. Some days he has a smile on his face and some days you can just tell that his heart is filled with tears, that he is drowning inside, that he is hurting like nobody deserves to ever hurt, but yet he faces the day, and he inspires the family, and he makes you smile like only a proud and loving father can, like only a good man could, and it’s just so fucking beautiful that I feel my soul crying out for something to cling to, someone to embrace, hoping to dance for just a moment, cheek to cheek, with something whole and clean and pure, anything at all, until the music stops.
But look, Owen, it’s a tough hand we’ve been dealt here. I’m not going to lie: things are crazy right now. Lives are being changed forever, and every day is a memory we’re making as one cohesive unit. Like Baba said, we’re rowing the boat together – you, me, us.
And in that regard, it’s just like life, little dude, where pain is an opportunity for growth and challenges are opportunities for learning. We face strife, and we overcome. That’s all it’s about, Owen. Face it, beat it. Face it, beat it. It’s all that we can do. Life, at its core, it turns out, is really fucking hard but yes, it’s punctuated by unbelievable moments of pure joy and bliss that makes things not only bearable, but beautiful, and yes, every staggering step forward is a step away from a setback and yes, we keep walking and we don’t ever stop, and yes, we go from one point to the next, writing our stories with every achievement, setback, skinned knee, band-aid, hug, and heartache we have seen, felt and experienced along the way and in that regard, life is a revelation.
Our saving grace is that we don’t have to do it alone, Owen – none of us do. I’ve seen the way our family leans on one another, taking turns at being the support and being the supported, and I know it’s no coincidence that you ended up in our arms, and perhaps more importantly, us in yours.
You’ll be okay, Owen, and so will we.
It will be okay.
Again, and again, and again…