Thirty Days of Caemon–Day Four: Butterfly Wings

Shortly after Caemon was diagnosed, a remarkable woman entered our life through a dear friend. Without ever meeting us, ever speaking to us, she wanted to help, and oh how she helped. Laurie Sterner and her husband Michael run a beautiful nonprofit called The Butterfly Fund. It is an organization whose mission is: “Helping children who are at the moment, fragile as butterflies.” Originally an organization focused on children with the rare disease Epidermolysis Bullosa (EB), the Sterners’ hearts are so big that they began to help children with any number of conditions, and ours was one of them. 

We did not meet the Sterners in person until after Caemon died, but we knew them instantly, and we are so grateful to them for what they do for all the families and children who touch their hearts. We are certain Caemon would have adored them. 

Today’s installment of our Thirty Days of Caemon tribute is a letter from Laurie Sterner sharing how Caemon changed her life in some really beautiful ways. Please read on.

My little story on how Caemon changed my life.

First of all, it’s pretty remarkable- almost a divine miracle that one little boy could change the life of a 50+ year old woman especially when she never got to actually MEET this sweet little boy.
I remember my daughter Allie telling me of the cutest little baby boy who used to frequent her children’s shop in Sonoma–we would see pictures of him and his mothers on a photographer’s website and just google and ooo and ahhh at how preciously beautiful he was.

A couple years went by and this same photographer’s website shared that there was a need for prayers for this little boy. I contacted a friend of the family and asked how our foundation, The Butterfly Fund could help. We met Carol, a close friend of the family and within minutes, we became the best of friends. We worked together on fundraisers and spreading the awareness as Caemon worked on getting better from the leukemia that invaded his little body.

We didn’t get the chance to meet Caemon yet as he was undergoing the protocol of receiving a bone marrow transplant. Michael, my husband would always ask, “When do we get to go see Caemon?” and I would always reply, “When he comes home.” Well, the word sadness doesn’t even come close to describing the feeling I get when I say that we never got that chance. We never got to see Caemon–we never got to KNOW this little boy–we never got the chance to hear him laugh or see him play–we never got the chance to do anything with him.

As I sat at his beautiful and heart-wrenching memorial service ( memorial services for children will always be something in this world that will never BE right in my heart) something in me changed. A few weeks before, another one of our children at The Butterfly Fund was dying. She was a beautiful 15 year old girl named Cassie who was planning her sweet 16 party in Louisiana. I had “known” Cassie pretty well over the last 6 years, but once again, never had the chance to meet her in person. I loved this girl, and as much as I wanted to be a part of her sweet 16th birthday party, time and money and other life situations wouldn’t allow it to happen. Speaking with her father, I asked him what she really wanted for her birthday–he said, “All she wants is you here.” I explained our situation and how this could never happen.

When I walked out of the church after Caemon’s service, I vowed I would never wait to meet another one of our children here at The Butterfly Fund again. We booked our flight and spent the most AMAZING time with beautiful Cassie getting dressed up, decorating the hall and taking lots of pictures as she celebrated the most beautiful sweet 16 party ever.

Seven months later, we visited Ian in Pennsylvania who also was dying from complications from his EB. Today, Cassie and Ian, sadly, are no longer here, but the memories of our time meeting them, playing with them and hearing them laugh will last us a lifetime.

Thank you Caemon for showing us that LIFE is not about deadlines and bills to pay and all the other things that seem to take up our daily lives. I still am sorry that we never met you in person, but the LOVE you showed us guided us to be PRESENT in the THIS MOMENT called LIFE.

Love,

Laurie Sterner

We thank Laurie for sharing her story and her heart. Please visit The Butterfly Fund’s website to learn more about the work they do (you’ll also get to see a photo of Caemon in their page banner).  

A tribute posted by the Butterfly Fund on Caemon's anniversary.

A tribute posted by the Butterfly Fund on Caemon’s anniversary.

If you have a story you would like to share about Caemon’s impact on you, please send it to us either via email (cisforcrocodile@gmail.com) or via private message on our Facebook page, Caring for Caemon.

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