As moms, we’re already wired to do all we can to capture memories. We snap first steps, video school plays, document holidays and generally chase after our kids shouting “smile” until our own cheeks hurt. We do this because early on we learn that children are only children for a very short, fleeting period of time. Imagine then, how it feels to learn your child has a life-altering or life-threatening illness. “Finding the time to do anything fun or creative seems impossible,” says our editor, Helen Jonsen. Especially when you’re a working mom. But at the same time capturing special moments takes on an even greater importance.
“Suddenly you’re on a terrifying rollercoaster and in the throes of the dizzying highs and heart-stopping lows, you wonder how you will remember the times when you actually caught your breath long enough to laugh, even just a little, with your child,” she says.
Here Jonsen shares tips on how she managed this task when her daughter, then 9, was diagnosed with cancer—including lessons she shared with other parents at the Childhood Cancer Symposium, sponsored by Alex’s Lemonade Stand Foundation.
1. Communicate: The Web is a Wonderful Thing
People want to help, so let them. Ask a friend or family member to set up a website that will help build community and support—because you’re going to need it. There are sites prebuilt for this purpose and CareCircle.com is the one we chose. It allowed us to keep a blog going, and to present a guestbook in which friends and family from around the world could jot a note or check on an update. The guest book saved us lots of time we would have had to spend answering individual emails. CareCircle automatically sent notifications to our registered members when new information was posted. We were able to post pictures that friends sent to our daughter and the ones we wanted to share. For families as far flung as ours from Australia to New York, it was an important tool. Plus, an online calendar allowed friends to sign up for meal delivery, errands or whatever else our family needed. The site is password protected if you want it to be—so it won’t pop up on search engines. Other sites to consider include Caring Bridge or one offered through the LiveStrong Foundation.
2. Find the Joy—and hold it close.
Within 10 days of starting chemo Helen’s daughter’s thick hair started falling out in clumps. It was heart wrenching. She collected the brushed hair in a wicker pail that was kept next to her bed. As her dad helped her pile it on top one day, he had a moment of sheer comic brilliance. He found a pair of sunglasses, positioned them on top and, voila! “Cousin It!” Something painful was transformed into a giggle that was shared over and over. Keep on eye out for such moments and document them.
3. Get Pictures From Your Child’s Perspective
Helen started scrapbooking with her daughter; it was something they could do together and her daughter could work on alone. But scrapbooks need pictures. So for her big birthday (#10) a group of her friends and their families chipped in and bought her daughter a small digital camera and an easy 4×6 photo printer. It was small enough to bring to the hospital or to use at home. Her daughter took pictures everywhere and so did her father—lots of shots were taken when they were at the hospital and Helen was a work.
As Helen and her daughter turned those many prints into scrapbook pages, her daughter told her stories she might have missed. There were pictures of the doctors, nurses and medical staff who worked so hard to make her daughter well and keep their spirits alive. There were also photos of family times, holidays throughout the year and a progression through the stages of treatment and moments of wellness–they took extra shots of that. Flipping through the book, there are a lot of smiles and other moments that should not be forgotten.
The scrapbook also served as a conversation starter when people would visit and neither the visitor nor Helen’s daughter knew what to say. The Cousin It photo and pictures of therapy dogs’ visits offered good stories that broke though awkward silence.
If you can, give your child a video camera, too–even one from a mobile phone. Don’t put any extra pressure on yourself to edit these outtakes into an Oscar-winning documentary. Just take comfort in knowing you have them.
4. Keep a “Good Moments Only” Journal
Most families keep a binder or detailed medical log. Adding a daily diary to our already exhausting days just isn’t realistic. But jotting down notes here and there is. Keep those notes in a journal of good-moments-only. The relief of not forcing herself to chronicle every daily detail opened Helen up to writing more often than she ever thought she’d have time for. “It’s a treasure of good stuff that would have gotten lost among the tedious, the sad and the bad.,” she says. Write about the time the tooth fairy came to the hospital; a special laugh you shared; a celebrity visitor. And make sure you don’t miss something clever your child said, a brave face she put on or other snippets of conversation that you hope will never be lost in your memory.
5. Start a collection and Come Up With a Motto
Chose something your child adores and begin a collection. Clocks, pink flamingos, aliens—the choices are boundless. People like to bring themed gifts and being able to add to a collection helps to make their gift feel special. And the collection will be something you’ll treasure—a vivid reminder of the smiles you saw.
Sometimes, words really are mighty. You never know where inspiration will come from; for Helen it came in the form of gel letters. Her daughter’s limb-sparing, life-saving leg surgery was just after Thanksgiving. Most of December (2007) was spent in the hospital recuperating as Helen and her family hoped to have everyone home for Christmas. Helen’s niece brought decorations for the hospital room: bright window gel letters that read “Wish Big!” What saying could have been better? It became their motto. “It still gets us through our days,” says Helen.
Note: My daughter was treated at Morgan Stanley Children’s Hospital of New York Presbyterian, the University Hospital of Columbia and Cornell, and continues to be followed by a team of oncology specialists at the outreach clinic of the Herbert Irving Child & Adolescent Oncology Center, supported by Hope and Heroes Children’s Cancer Fund.
This article was a collaboration between editor Teresa Palagano and I while at Working Mother.