Wednesday, February 29, 2012

Julia


When 11 year old Julia Gebert was just 3 months old, her mother Pamela noticed that her eyes weren’t tracking the same way that her older brother Samuel’s had when he was a baby three years earlier. She and her husband Steve took Julia to the doctor and a diagnosis was arrived at very quickly—Julia had a brain tumor. It was called an optic pathway glioma. The tumor was in a dangerous position and it still is all these years later. Three different types of chemotherapy have been used and the family now has experienced over decade worth of doctors visits. The tumor is stable thankfully but it cannot be removed and instead simply has to be perpetually watched.   
In infancy, this tumor rendered Julia almost completely blind. She can notice shadows, which does assist her a little bit when navigating a familiar room, but she has been permanently disabled by this tumor.
Julia has been attending Camp Goodtimes since she was a little girl at age 7. Sending her that first year was no easy decision for Julia’s parents. Now, four years later, she still looks forward to camp every year and she is still little. She travels a long way to get to camp, coming all the way from Alaska where 10% of the Camp Goodtimes West campers live. She makes the trip every year with her older brother Samuel. This year for the first time, her younger brother Andrew (age 7) was also able to attend. Cancer attacks entire families and siblings also benefit greatly from the camp experience. All the kids at camp gain strength through the bonds of their common experience.
Julia is a treasure. When she's at camp, in many ways she becomes our camp mascot because of her petite stature, pixie-like qualities and enormous heart. Julia just melts people with her smile. In fact, I’m surprised there’s so much ice in Alaska with Julia’s ability to melt stuff! She sees the world like few others that have ever been to camp and she is genuine to the core. She doesn’t judge people on superficial qualities. She doesn’t care what you look like, how old you are or how fashionable you are…she just cares about you. She soaks up the compassion of others and then returns it tenfold. She needs people. She needs an arm, a hand, a boost, a perch, an explanation and a shared path. And she appreciates it immensely. When she gets excited, she just bubbles over and her small body just cannot contain the energy, which causes her to start dancing in place while wearing an impossibly huge smile. If you are lucky enough to witness this in person it will make your day.
The last time I had the pleasure of seeing this was at the end of last November. Thanks to the American Cancer Society’s Anchorage office, I was offered a plane ticket to come up and be the surprise guest at the Alaska campers’ Christmas party. A one day Alaskan adventure. I had never been to Alaska before and I was thrilled by the idea. The Seattle area kids for over 20 years have had a holiday cruise donated to them by Argosy Cruises and a few years ago, feeling like they were missing out on some holiday fun, some camp counselors from Alaska, ‘Goonie’ and ‘Wiki’, started organizing a party for the local kids. Local in Alaska does mean something a bit different than in our neck of the woods. Some families even flew in from Fairbanks to attend. At the party, the kids gathered to watch a video of me sending a greeting from the staff in Seattle, at the end of which I burst through a door with camp music blaring. The kids did a huge double take and then completely freaked out. When Julia “saw” me she just started doing her dance right away and I quickly joined her and so did everyone else. After a wonderful visit with all of the kids, Julia and her family came to say goodbye. Sam came up to me and handed me a beautiful framed Native Alaskan themed drawing that he had done. 
I was so touched to be able to receive such a thoughtful gift on my first trip up north. My next gift was something entirely different. I said goodbye to Julia’s parents and then I bent down and hugged all the Gebert kids at the same time. Julia then said something while buried in the middle of that hug that made my whole epic one-day Alaskan adventure worthwhile, “I don’t wanna to let go.” She loves random classic moments (we definitely have that in common!) and when she’s having fun, she doesn’t want the fun to end. No wonder she loves camp so much.
The Gebert family.
At Camp Goodtimes, Julia has gained another family and she has no limitations. She rides the tire swing, goes swimming, rock climbing, tandem bike riding and she’s even driven a 120 foot boat. She also loves to sing and thinks nothing of sharing a song with the entire camp. A few years ago, Julia came up to me and asked to sing a song at dinner. I lifted her up so everyone could see her and she started singing “Amazing Grace”. The dining hall that was usually alive with clanking cups and rattling silverware grew instantly silent. Julia sang slowly, softly and deliberately and finished with this verse:
“I once was lost…
but now, I’m found…
I was blind…
but now I see.”

I only wish that the rest of the world could see as clearly and as beautifully as dear Julia. Bless her sweat heart.

Sidenote: Julia’s mother Pamela sent along a note of thanks for what Camp Goodtimes has meant for her children. In her note she said;
“Caring for a sick child affects the entire family and siblings are also taken for a ride on the scary roller coaster that families of children with serious illnesses experience. Camp Goodtimes teaches kids to not let their disease define them. At camp, they are not the ‘poor little sick child’. They are all too busy having a fun time and living life! These days, Julia plays the violin, tends her own vegetable garden, loves to hike and ski, and goes fishing and camping with her family. For Julia, being blind is not an insurmountable obstacle. She considers it a mere nuisance and does not let it stand in the way of having fun and trying new things. We are enormously thankful for the wonderful and loving people who care for our children while attending camp. Camp Goodtimes experiences give back lost pieces of a childhood. Camp is only one week, but the changes and confidence last a lifetime.”
-Pamela Gebert


P.S. Here's a link to a short movie trailer style video I edited while I was heading to Alaska and showed the kids at the actual party. They especially enjoyed the part where I was attacked by the bear! Mooselips' Journey to Alaska

5 comments:

  1. Simply, eloquently beautiful. This should be read at the Wine Auction!

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  2. Thank you so much for writing this, Moose. I left Alaska last May, and knowing I'd be missing Camp Christmas parties and ACS Anchorage Galas (to raise money to send AK kids to Camp) was one of the hardest parts of leaving. I miss those kids SO MUCH!
    Erin (aka Otter)

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  3. Thank you so much Karen. And thank you also Otter for all you've done to support these kids and what you continue to do by caring about them so much. :)

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  4. I can see you had some wonderful time. A healthy relationships builds.
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  5. What a beautiful blog about Julia. I haven't seen her in a few years. Please tell Julia and her family "Pineapple says hi!"

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