We are faced with challenges every day. We also faced with a choice of how we respond to these challenges. Today I had a slap in the face reminder of how, even when faced with the worst hand a parent could ever be dealt, there are people that choose to seek the positives… there are people that choose to Dance in the Rain.
Lilee-Jean was born 5 days before my girls in late 2010. She started her life just like every other child… but 10 months later, something horrible started to grow inside her little developing brain – a tumour called Gliobastoma (GBM). For the next year and a half, Lilee and her family did every treatment they could to beat this awful disease. Although the chances of winning were very low, they kept fighting… After months and months of treatments and battles, they started to feel like they had a chance of beating this tumour.
Just when the sun started to shine a tiny bit on this family, the dark thunder clouds came rolling back in and another tumour was discovered… their worst nightmare came true: time officially became the enemy. Chelsey, LJ’s mother, shared this quote in a recent blog post:
“Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, ’cause it’s gonna have a long day doing it.”
― Jim Beaver, Life’s That Way: A Memoir
They still fight every day. As devastating as this has been to this family, they somehow have had the power to change their lens… to understand that if there is a chance of shortened time, they need to embrace every single moment they have with their precious daughter. Chelsey wrote,
Once again, as always, with urgency, we are living. We are laughing. We are dancing. And we are singing…
…Andrew [LJ's father] and I have compiled a realistic, relatively short and doable list, not only to fill Lilee-Jean’s life to the brim with love, laughter and magic, but to keep ourselves focused on our now and not our later.
We have chosen to call it “Dancing In The Rain” in stead of a “bucket” list for obvious reasons, and if time allows, we will hopefully be adding to it as we cross things off.
There is no better way to fight disease and to fight death, than to live. So when we finish our last few stomach churning, heart wrenching “to do’s” they will be put aside, and left to gather dust until the time comes for them to rear their ugly heads… IF that time does come.
One of the items on the list was “go to school”. Because of Andrew’s ties to our community (he attended our school years ago and is very well know in Agassiz), LJ’s story has grabbed and wrenched the hearts of many of us in Agassiz and at Kent School (I wrote about this here after she came to visit us following surgery). Both our kindergarten teacher (Stacey Garrioch @garrioch) and I reached out to the family to offer LJ a chance to spend her first day at school with us. Andrew and Chelsey agreed that this would be a great fit so this morning, we welcomed our newest student to Kent School.
Stacey set the day up as a typical day filled with tons of play-based learning for Lilee-Jean and her classmates. As with every new member of the class, the students were so excited to meet and play with LJ – who showed up with a big smile and her “lucky bear” and new Tinkerbell lunch box. She hung her coat up on the hook with her name on it, met her buddy and sat down and joined the class. She was, of course, one of the VIPs so this meant she led some songs, shared calendar time, and told us all about the weather. She was a real Kent student in Division 10. I think the best part of the day was when I walked in to check in to see how things were going and I couldn’t see Lilee-Jean; she completely blended in and was just ‘one of the kids’ playing in the house centre. She was busy feeding her baby with two other students like any typical kindergarten student would be doing. The other times I popped in to take in the moments, she was either pointing out the L in a puzzle and saying this stood for Lilee-Jean, eating her snacks with her classmates at the table, writing on the white boards, or dancing the Gummy Bear Dance with her friends. I did not want this day to end but I knew she was a typical two year-old and needed her afternoon nap.
I didn’t want this day to end because I wanted to continue to be able to pop in and see Lilee-Jean bringing joy to all of us by just being herself in her first day of school. I imagine this is what Andrew and Chelsey go through almost every moment of their lives… and unfortunately, the moments must fly by. At noon, Lilee-Jean had her lunch and hung out and played with her classmates. She then gave every child and adult a big warm hug and left school with a huge smile as she danced in the puddles and caught the rain drops in her hands. Tonight she will have a girls night as she and her mommy go to a spa and a hotel to continue their dancing in the rain.
As I sat in my office to collect my thoughts, I wondered: when faced with life’s challenges, do we look through the lens of all the problems we cannot change? Or do we choose to change the lens and see all the wonderful moments life has to offer and dance in the rain? Andrew and Chelsey are going through what every parent fears. They CHOOSE to embrace the life they have with their beautiful daughter, Lilee-Jean. Because they choose to do this and choose to share their story, I am forever changed. Lilee-Jean may not live on forever but all that she and her family have taught me about life and love will live on through me and so many others that have been touched with their story.
Thank you so much to LJ, Andrew, Chelsey for sharing today with us. Thank you for letting so many of us into your lives through the window of social media. Thank you for inspiring me and so many others. Thank you for Lilee-Jean for allowing me to spend the most beautiful morning dancing in the rain.
Love for Lilee… forever. xoxo
My daughters sang a song they love and one that I know means a lot to Lilee and her parents. Have a look at the video below or view it here.