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So I call a friend who is a brilliant pediatric neurosurgeon, despite being a raging coke head. He agreed to do the surgery immediately. My wife called her mother for help, who said she couldn’t make it – she had other plans or something. My wife was crushed. Felt abandoned by her own mother. She was crying so much that our oldest daughter, who was not yet two years old, took her own pacifier out of her own mouth and tried to stuff it into her mother’s mouth. “Here – this makes me feels better. This is my most precious possession in the whole world – you can have it.” Oh my God. I call my Dad and say “Julia needs surgery, right now. I need you to come down to Tennessee, right now, to take care of her older sister.” He said, “On our way,” and he just hung up the phone. The conversation took maybe 15 seconds. Just like you’d expect. He and Mom left their groceries on the counter in Ohio and bought underwear at a Walmart on the way down. Of course. Oh my God.
It’s hard to describe what it’s like to face losing a kid. We held Julia in our arms, and looked into her big brown eyes – the most perfect, beautiful little girl you’ve ever seen. And we waited for them to take her to surgery. Wondering what the hold-up was, praying they’d get there soon, and hoping they’d never come, and we could just hold her there on the bed in pre-op forever and ever and ever and ever. But then they came. And then they took Julia, out of her mother’s loving embrace. Oh my God. And we wondered if we’d get her back. As a parent, you’d give anything to switch places with her. But you can’t. It’s not fair. The poor kid has only been here a few months, and then this? This is not fair. What a load of crap. Any parent would throw themselves in front of a train for their kid. Watching them suffer is unbearable. Every cloud has a silver lining, right? Wrong. What a load of crap. Oh my God.
Julia made it through her surgery, we made it through the healing process, and she did extremely well. Until she was three, and the usually ray-of-sunshine Julia got grumpy, and then puked on her little pink light-up sneakers for no apparent reason. Margot thought, “Uh-oh.” I no longer questioned her judgment on such matters, so we did another CT right away, and sure enough, the shunt they had placed initially had broken, and the pressure was building up in her brain again. Another emergency brain surgery.
This time, they had to decompress the brain carefully and gradually over the course of several days while giving her home IV antibiotics, so they put a shunt into her brain and fed it through a pressure valve to an external bag. So little three-year-old Julia was running around the lawn, her head half-shaved, playing with her sisters (one older, one younger) with a tube running from inside her brain to a bag of cerebrospinal fluid she carried on a belt around her waist.
We had a huge party for her return home because we were so happy that she had made it back again. What a tough kid. Her sisters liked the balloons. We were a very Barbie-intensive household at the time, and the girls had every Barbie you can imagine. Whatever would distract Julia for a bit. As you can see from the pictures above, she felt tired and lousy. It was hard to watch. We gave her whatever she wanted. I completely understand how kids with serious illnesses become spoiled brats.
They later replaced her external shunt with another internal shunt, which drained the cerebrospinal fluid from her brain to her abdominal cavity. After that surgery, we then waited to see if she would develop normally – if she would walk and run, if she would go to normal schools. Every developmental step was cause for quiet celebration and renewed thanks to God.
And as it turns out, by the grace of God, that was her last brain surgery. So far, at least.
Julia is now 21 years old now, and is a remarkable, wonderful, beautiful young lady. She’ll be a senior at Clemson in the fall, majoring in business with a minor in stats. She still has that shunt from 18 years ago. And we thank God for that shunt, and for cocaine-addicted neurosurgeons, every day.
I’m not sure if all this has affected her. I doubt hydrocephalus would affect her height, although she’s a short and stumpy 5’10”, while her sisters are a more normal 6’4″. She’s the only one of her sisters that is not in Mensa, although she only missed it by two IQ points. She’s still brilliant by normal standards.
She was a very good athlete in high school, but her sisters are world class athletes, with full rides in major sports at major division one schools. Julia is not as quick, graceful, explosive, coordinated, agile, and balanced as her sisters. But neither is anybody else. Her sisters are freaks.
So is Julia different because she’s normal? Or normal because she’s different? It’s hard to say, because her sisters are so unusual. But again, Julia is really smart and a very good athlete. In any other family. She’s a tremendously gifted kid. Thanks be to God.
Many hydrocephalus patients have real problems with multi-step problem solving and with even basic motor skills. You’d never know anything was wrong with Julia. She is so blessed.
How did we handle her shunt growing up?
I never told her teachers about it unless they asked what that thing was protruding from her neck. I never told Julia she couldn’t do anything. If she damaged that million dollar head of hers, I figured we’d do our best to fix it. But I did not want her to live her life in fear of the possibility of injury. Have at it, kiddo. Don’t worry about it. Contact sports? Sure. Whatever floats your boat. You’re the same as everybody else. So just go play with your friends. Life is beautiful. Every day of life is beautiful. Just go play.
In fact, we’ve rarely spoken about it, except when she’d have a scare, and we’d run to the hospital for yet another CT, which happens from time to time. She recently fell and hit her head on a rock while camping with some friends – she felt really dizzy, so they had to haul her to the ER for another scan, which thankfully showed that her shunt was intact. She got Tylenol instead of another brain surgery. She was pleased. So were we.
She was an unusually mature little kid. She understood death at a very young age, and we were very open with her about what was going on. She knows that every time she goes in the hospital, she might not come back out. She’s worked all that out in her head. Because she had to. She has a strong faith in God, because he’s always been there for her. Always. And she knows it.
What did I learn from all this?
Nothing, I don’t think. I knew that I loved my kid more than I loved myself. And I knew that I would do anything for her. Even if my ‘anything’ wasn’t much. I would do what I could. Whatever that was. It’s important for parents to understand that they can’t protect their kids from everything, but you do what you can. I learned that little girls can be pretty tough when they need to be. But I already knew that. If there was some profound lesson in all this, I missed it.
You do what you can. And you hope for the best. And that’s it.
What did Julia learn from all this?
Nothing, I hope. Life moves on, whether you have a tube in your brain for the rest of your life, or not. Whatever. You’ve still got to work harder in practice than everyone else. If you want to be any good at anything. Moping around and feeling sorry for yourself is unproductive. So be of good cheer, and c’mon – get going.
And she always did. I never pushed her. She’s always been an absolute joy to be around, and she’s always outworked everyone around her. She’s been successful because she’s done her work.
She’s a tough kid. But so are her sisters. Kids are tough. It’s their natural state. I don’t think her medical adventures expanded her horizons.
At least, I hope not.
These are things we should all intuitively understand, regardless of what challenges we have faced in our lives.
Life happens. Sometimes it’s not fair. In fact, it’s often not fair. And efforts to make life fair are universally counterproductive and destructive. So we are left to simply accept that life is not fair. So Julia’s just happy to be here. As she should be. And she intends to make the most of the gifts that God has granted her. As she should.
Julia is visiting for a week, over the summer. I’m smiling at her as I type this, as she just got back from Goodwill, shopping with her sisters. She got a Clemson sweatshirt, a nice top, and a cute skirt. All for $11. She’s so pleased. As she should be.
Life is beautiful. It’s not fair. But it’s beautiful.
There are so many people in this world who are perpetually unhappy because they think life is unfair.
What a waste of life.
Of course life is unfair. But it’s beautiful, and we should all rejoice in each day, and make the most of it, like Julia. We can all learn from Julia.
We may wish that life turned out differently. We may wish that life treated us better. We may wish that life was fair.
Life is not fair.
But life is beautiful.Published in