Time for the big news! Our new nonprofit business is officially up and running! Readers, meet Lens of Hope.
I haven’t discussed it here because I’m just not one for deadlines. Mentioning it to a real live person might put me under some kind of undue pressure. I have enough going on in my life and I don’t work well under pressure. Actually, that’s a lie. I only work under pressure. Remember when I waited until the week before Husband left to finalize the new estate planning documents? How about waiting until the month before a half marathon to “train?” Then there was last week, when I waited until there was no underwear left in the house before doing any laundry. I bet all of that paints a pretty good picture.
But sometimes, things happen anyway despite my worst efforts. You can call it fate or cosmic intervention or Kismet or the collective conscious if you’d like. But I call it God.
It all started this summer when a friend asked to meet me for coffee to discuss a “project.” We had met the year before planning our daughters’ school auction project, but had become even closer when a nine-year old boy whose family was close to Niccole’s went through a long and cyclical bout with leukemia. It was a heartbreaking reason to become friends.
I started wondering what the meeting could possibly be about.
Niccole is a gifted photographer with a sincere heart for family, and it shows in her art. You’ll find people taking off their shoes, messing up their perfectly styled hair, or romping with the family dog on her shoots. So it’s no suprise that she was able to capture the bursting spirit of this amazing little boy, Luke, once his leukemia was in remission in 2009. Can’t you just see it in their faces? The family is breathing, healing. And Hoping. The photo shoot was a celebration.
But January brought new symptoms, and relapse. The final relapse. Luke, the boy who defeated cancer, would become the boy who defeated fear. By May, Luke was gone from the earth. He left a scar behind for so many who loved him, and a deep impression for many more who he barely knew.
After the focus had turned into making Luke comfortable, Niccole was “lucky” enough to snap a poignant family portrait one day. Luke wasn’t very tolerant of having his picture taken. This time, it was different. The boy who was pictured hanging on his mom, barely able to look into the lens, was now smirking, center stage. Luke was standing firm. He looked wiser than a 9 year-old should. But he was looking directly into the camera – probably because he knew he was being captured for a reason.
By the time that picture was taken, everyone knew. You can’t really tell in the picture how sick he is. But everyone knew. Including Luke.
Luke’s attitude, even as he talked with his Dad about going to Heaven, was an inspiration to lots of folks. Thousands.
Enter Lens of Hope, stage right.
Luke had inspired Niccole to find a way to help others. She wanted to do more. She couldn’t take the cancer away, but she saw lots of families at the hospital, and very few of them had family photos beyond a Polaroid or an impromptu snapshot. She knew she could do something, but she wasn’t sure how. She didn’t feel brave, but she knew if Luke could face leukemia, she could have the courage she needed to approach families in need. She came up with the idea to start a nonprofit that would provide free professional photography to cancer families, and then she asked me to come along for the ride.
And I said yes because of my own experience with photography.
See, when I think about Luke, I reflect on The Preschooler’s birth. I blogged about this correlation in October. There were some irregularities with Preschooler’s breathing when he was born, and he was whisked away to the NICU. But hey - lots of kids are born with some kind of respiratory problem, and most get over it. I would not let this rob me of my joy. I was ignoring it. (Sound familiar?) Afterall, I was just realizing that I would not have to divide my love as I had feared. On the contrary, I was experiencing for the first time that my capacity for love had actually multiplied with the birth of my second kid.
I was in the NICU having this wonderful thought, thinking about how big God’s love must be, when in walked a white-haired lady with powdery gloves and a contraption on wheels that looked like something out of my high school dark room. “I’m here for your newborn pictures” she chirped. I almost forgot about the obligatory swollen-face Mr. Magoo baby pictures! These folks are by no means savvy photographers. But they have tricks that make your newborn open their eyes and look pink and cute. All my photos made my kids look shrivelly and crusty and beaten up, and drunk. In about 30 seconds she masterfully raised the camera platform over my little babe, slipped a hat on him, stuck her gloved finger in his mouth, blew a little gust of air on his face, and then yanked her hand away. He open his eyes and his mouth was in a perfect little heart! What a mean and awesome trick! I signed a form, and she was on to the next sucker.
The pediatrician came in and asked us to sit down. A few of the nurses stopped and stared. The quality of the air in that little room changed drastically as the doc started talking about the results of some blah blah scans that were looked at by some blah blah experts at blah blah University overnight. He used the word ”condition.” There were lots of medical terms flying around making the air even thicker. I kept looking at Husband for a read on the situation, but his face wasn’t telling me anything. Damned warrior training. I had my hand inside the little plastic incubator, and my baby was involuntarily clasping my finger. The fingers of babies always amaze me. Perfect miniature replicas of adult hands. “Blah blah bone scan blah blah.” With my thumb I rubbed the soft part of his tiny hand, the only spot where there were no tubes or monitors. “Wah wah Doernbecker blah blah.” I focused on that spot instead of his bandages. ”Blah blah mumbo jumbo.” His very, very small hand.
I finally looked up when the doc paused and said, most people know it as ”dwarfism.”
I won’t keep you in suspense any longer because let me tell you, the six weeks I had to wait took years from my life. The Preschooler has a mild case of thoracic dysplasia, which is basically fancy latin speak for an unusually formed rib cage. The only real side effect is that his lungs beat against his mini-ribcage a little more vigorously than ours, which means his metabolism is through the roof. His most grave symptom will be avoiding the wrath of the rest of the family, who will be forever perturbed by his genetic triumph over his inherited German obesity, which will allow him to always eat a second piece of pie with extra whipped cream. If it were not for a bone scan, he might have lived his entire life without knowing it was even called something. And if I have anything to say about it (I do), he won’t know about it for a very long time.
Still, there was a six week period where we waited in agony for a diagnosis. There are over 200 varieties of dwarfism, and some of them debilitate and asphyxiate as organs and flesh grow. There were bone scans and tests and visits to the Children’s Hospital to see specialists in fields I had never heard of. There was genetic testing and extensive interviews about family medical history. There was a lot of poking and pricking and holding down and crying. But mostly, there was emotional numbness. My love felt stronger than ever, my faith was stronger than ever, but I was no longer joyful. I carried a bittersweet burden that overcame the joy.
I held my baby boy, but when I looked at him, I cried. I laid in the bed next to him, pinching him to keep him awake long enough to eat. I broke down when I realized that he was so used to being pricked that he didn’t even cry any more. I laid awake all day near him, even though I was exhausted, memorizing everything about him. I have amazing memories of him as a baby that I don’t have for my daughter, and I know this event is the reason. My chest actually physically hurt thinking about what the future had in store for him. I was ready for what God had planned for us. But he – he was so very small.
And in the middle of all that, I got the pictures back. I had forgotten all about the pictures …
From the instant I opened the envelope, I was flooded with the memory of the joy I felt that morning, before the doctor gave us the bad news. When I saw the picture, I felt that joy. I remembered it. I thought about the funny lady with the gloves. I thought about my chatter, and Husband’s proud smile. I recalled the excitement of taking the baby home that day, even though I’d later learn it wouldn’t be for a week.
When I saw that picture, I felt a piece of joy. I felt Hope. This picture captured my beautiful perfect seemingly healthy baby. I pressed the picture up to my chest and held it there, as if some of it would soak in. I held it there for a very long time, with my eyes closed. Just having it meant everything.
That’s why, when Niccole came to me and said, “I want to form a nonprofit that provides free photography to cancer patients and their families” I immediately said yes. I said yes and I had no idea what that that meant. We both have jobs and families and crazy lives. Our formation meetings were often late night Skype sessions in our jammies. We converted ideas into action, but then, we stalled out. We would forget meetings or cancel appointments, or work piecemeal. We had targeted an incorporation date, but we didn’t really have any concrete plans beyond that for launching the whole thing. Nicci was homeschooling and her photography business was taking off. I was traveling to Seattle for Mom’s radiation, and we were getting ready for Husband’s departure. There was stuff, lots of stuff.
Then God called.
That is, the editor of a family magazine called on us. The Preschooler had won a funniest quotes contest and she emailed to let me know. We struck up an informal conversation and I picked her brain a little about how nonprofits do magazine advertising. And that was it – until she called back in November and asked to feature us in her nonprofit spotlight for December. “December? Of 2010?” I thought. No way. We can’t do it. It’s impossible. But I heard a voice yelling, ”Get off your butt! There are people out there who need me!” The magazine’s original plans for the December edition had fallen through, and because my kid won a funniest quotes contest for asking the barber for a bald spot, the editor now wanted to feature Lens of Hope. NOW. And I was questioning it? I answered the only way I knew how.
“We’re launching in … December! Uh, yeah. December … 2010.”
And that’s how Lens of Hope was born. It’s been a long pregnancy, folks. About nine months in fact, and not without complications.
So there’s my big news, friends. If you made it this far, congratulations. I tried editing, but this was one I could not manage to trim. I never thought I’d be involved in something like this.
You know, all these photos are going to need stories to go with them in pretty short order. And I think I know just the unpaid blogger/lawyer/writer/incorporator/co-founder for the job.