Friday, January 23, 2009


Let me tell you about Brian. Brian is my 22 year old nephew, the second son born to my brother and his now-ex wife. He was born in Okinawa, Japan, because my brother was stationed there during his enlistment with the USMC. My sister-in-law was already raising a toddler on her own with my brother overseas, and staying in my childhood home with us, just a year after my mom had died. She was understandably miserable and lonely without her husband, so she traveled to Japan - 24 hours on planes with a toddler in tow - so that the family could be together for Brian's birth.

The first time I met baby Brian, his eyes followed me and when I spoke to him his eyebrows would rise, as if to say, "How interesting. I'm listening. Please do say more." As a little boy, there was just something about him. He was sort of an old soul, with an empathetic sweet nature that belied his gender and his youth. I remember one trip we all took together, all of us piled in my brother's van on the way to Deep Creek Lake. About 9 years old at the time, he looked into my eyes and took my hand. He held my hand for that entire drive. What little boy would risk ridicule from the other kids just to sweetly hold his old aunt's hand for 3 hours? Brian would, that's who. To this day, the memories of that ride bring happy tears to my eyes. Any time he talks to me - even at the age of 22, when many young men are self-absorbed little bastards - the conversation ends with him first saying, "I love you, Aunt Jan". Brian knows what's important in life, and he's come by that knowledge the hard way.

When he was a preschooler, we noticed that he ran sort of prancy, with his butt sticking out. He would sometimes go up stairs on all fours rather than upright. He had difficulty getting up off of the floor, and his calves were muscular looking compared to his thighs. Something we all thought was a phase or maybe some developmental delay turned out to be much worse: Duchenne Muscular Dystrophy. We learned that we could expect Brian to have increasing difficulty standing and walking, and he would most likely be completely confined to a wheelchair by age 12. From that point on, the disease would continue to attack his muscles, and he would not even be able, in the future, to even roll himself over in bed. Finally, the disease would weaken and at some point, incapacitate his heart and lungs... and he would die.

My brother and especially my sister-in-law were very matter-of-fact with Brian when he'd ask questions about his condition. Brian took in the information in his quiet and thoughtful way. You hear this about kids with disabilities all the time so much it sounds cliche', but the God's honest truth is, I never once heard that kid complain. The closest he came was during that Deep Creek trip, when his brother was running down to the lake, racing some other boys. "I wish I could run, Aunt Jan", he said. He was still holding my hand, and he looked at me with so much sincerity that all I could reply was, "Yeah, I wish you could run too, bud. It really isn't fair." What else was there to say?

I adore my nephews, if you can't already tell. I sort of grew up as they did, being only 13 and 15 years older than they are. For a very short time, they lived close by, but those dyed-in-the-wool southern boys were like fish out of water here in the northeast. I hated to see them go, but I knew in my heart of hearts they'd be happier living in the south where they'd put down roots. It's been hard to watch them grow up 700 miles away from me, and only being able to visit occasionally. It's even harder now that Brian's disease is progressing.

At age 22 (soon to be 23 in April), he is now to the point at which he can't roll himself over in bed. Put himself into his wheelchair on onto a toilet. Open a can of soda. Hold a pencil to write for any length of time. They've got quite a system going there, however. Between his mom and his older brother, he gets placed into his powered wheelchair before she goes to work in the morning. He has the cordless phone with him, and there's a little cooler full of snacks and drinks laid out on the table that he can access easily throughout the day. His mom, a dairy department manager at a grocery store, calls him during every break to check on him and chat. She's been mom, dad, confidante, hardass, and best friend to those boys - and what seems to be the only constant in their lives.

As a little boy, he had many painful muscle biopsies, and barbaric-sounding surgeries in which his Achilles tendons were cut to relieve contractures in his lower legs. As a young teenager, while his parents were going through a messy breakup, he had a metal rod screwed into the entire length of his spine. This was to prevent increased pressure on his heart and lungs from increasingly severe curvature of his spine. I remember sitting beside him in the noisy, crowded ICU ward of Emory Hospital. He, as always, was holding my hand, even though it caused him great pain to move at all. I put my head down close to his and told him, with tears in my eyes, that he was the bravest boy I'd ever known. He always has been.

Every time I travel to visit him, there's a little less he can accomplish physically. That never dampens his spirit. The kid who would only say, "Hi... fine... yeah... love you... bye" on the phone talks my ear off while I am there visiting with him. We watch a Braves game and talk baseball, or he shows me his knife collection, or he just tells me funny stories about stuff that happens around the house day to day. He takes more and more medications every day, because now his heart is not pumping as efficiently as it once did. He has more aches and pains than he once did. He can feel the screws of the metal rod shifting around in his neck a little when we transfer him from bed to chair. When he overindulged on his 21st birthday (4 beers, in case you are wondering), I was awakened in the middle of the night by the phone ringing. It was Brian, calling on the intercom. He felt like he was going to throw up and needed someone to sit him up in bed. I remember sitting there with him, holding the garbage can for him as he puked up his birthday beer, thinking to myself: What if nobody had heard him? As if he had read my mind, he laid his head on my shoulder and told me not to worry, that he was fine.

So now with a single email, opens another chapter in this sweet boy's life:

hey hows it goin? im doin fine let me tell you about this girl she is 19 and she is the sweetest girl in the whole world we have been datin for seven months i love everything about her and i believe she is the best thing that has ever happened to me and im gonna be with her forever she makes me happy and i reckon thats all that matters the only hard time we had is we were apart for two months and she waited for me we both went crazy without each other and this month i asked her when she wanted to get hitched and we came up with march 1st we are gonna get married at the house nothin big or fancy if you want to know anything else just ask me. oh yeah her name is cassie ****

I sat there, mute, for a couple minutes. My sweet little boy. Getting married. Though still as sweet and thoughtful as always (he's the one I hear from most frequently, of all of them), I finally realized he's no little boy any more. Then, as the news set in, I broke into a perma-grin for the rest of the day. One of the things that had always made me so sad about Brian's condition was that I thought he'd miss out on so much; once more, though, he has defied the odds and has not allowed himself to be defined solely by his condition. Some pretty little girl sees in him what I have always seen in him. I hope that he realized when he typed "i believe she is the best thing that has ever happened to me", that he is most likely the very same to her. If not, he can ask his old aunt.

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