It’s ok Mommy, everybody has a little bit of pain.
This kid slays me. She’s five years old and she’s my great-niece.
When Maddie was born she was diagnosed with Cystic Fibrosis. We were afraid but her mom (my niece) and her dad were matter-of-fact: they weren’t going to let CF interfere with their daughter having an amazing life. Evening inhalers, medication and frequent hospital visits were the new normal. The other stuff didn’t change: rambunctious playing with all three kids, and family trips and picnics and hikes and time with friends, family and grandparents. They had it more or less under control.
Then, last year at the age of four, Maddie was diagnosed with leukemia. When I heard the news, I could hardly breathe. I couldn’t imagine how her parents would cope. But they are. Like parenting rock stars.
Everyone who knows Maddie just wants to do something – ANYTHING – to help. Both sets of grandparents jumped in to help with Maddie and her two siblings. Friends and family have delivered meals, baby sat, hosted sleep overs and play dates, sent encouraging Facebook messages, taken the parents out for drinks or movies and wiped away hot, fearful and frustrated tears. Friends even sent a real-life Elsa from Frozen to the hospital to sing to and play with Maddie! Collectively, I suspect we have been helpful, supportive and likely irritating, despite best intentions.
But we’re all powerless to do much more than stand on the sidelines and cheer for and support the home team. Fortunately, in May we will gather at the Walk to Make Cystic Fibrosis History. Maddie calls it Maddie Day. Why not? Dozens of us come together to walk for Maddie, decked out in purple tee-shirts and hats that say #MadforMaddie and oozing love for this kid and her family. It kind of is Maddie Day, as far as we’re concerned.
As a fundraiser, I used to grudgingly acknowledge that special events are an important part of an organization’s fundraising program. While I understood they had many benefits for organizations, I was also quick to cite some of the challenges events posed for organizations.
I have an entirely new perspective now.
Now I am experiencing a fundraising event from the perspective of someone who is feeling really vulnerable, afraid for a beautiful little five-year-old and who aches watching her parents be so brave in the face of the unthinkable.
For my family, unaccustomed to overtly expressing our emotions to each other, the Walk and the act of fundraising is somewhat of a proxy for expressing our love for Maddie, her siblings and her parents.
It offers a sense of belonging, coming together with a community of people who also love Maddie, her siblings and parents. And it’s equal parts heartwarming and heartbreaking to see other groups who are there, in support of their own version of Maddie, each with their own fears, hopes, triumphs and challenges.
The walk offers a way to channel feelings of powerlessness and grief into action and to feel like I’m doing SOMETHING. It’s an opportunity to be small part of a bigger solution, something I couldn’t do on my own.
We’ll be walking with a greater sense of urgency and gratitude this May. We have been awed by how her parents have risen to the occasion with grace and unending positivity. And Maddie is a warrior. We’ve watched her “fight like a kid” this last year. The last year of chemo has included every complication I could never have imagined: meningitis, chronic pancreatitis, diabetes, constipation, osteoporosis and the list is so long I can’t remember them all. And it has included outpourings of love and laughter and tears and frustration and fear – for everyone who loves Maddie and her family.
Despite everything Maddie has endured, she is sanguine about it. When she noticed her Mom looking upset, watching her five-year-old in pain, Maddie comforted her. “It’s ok Mommy. Everybody has a little bit of pain.”
Here is what my niece, Maddie’s mom, said in her Facebook post inviting people to donate to team Maddie:
As you all know Maddie was diagnosed at birth with this life threatening disease and just last year was diagnosed with Cancer too! She is fighting really hard to stay healthy and beat not one but two fatal diseases. Help us find a cure for CF so once she has “beaten” cancer we can say she can “beat” CF too!
My niece’s life motto has always been “kindness inspires kindness” (#kindnessinspireskindness). She has been performing random acts of kindness for years and bringing her kids along to learn about kindness from doing by handing out fast food coupons to strangers or shoveling driveways or making cakes for the nurses caring for Maddie and so many other kids in the hospital.
This May while we walk on Maddie Day, a fundraising event will become a manifestation of that motto, as her friends, neighbours and family share their kindness, come together with a community of fellow carers, show their love, and channel feelings of powerlessness and grief into loving action.
Fundraising events are about SO much more than money.
This article was originally published in Hilborn Charity E-news on May 22, 2018.