It has been an amazingly full weekend of visitors loving on Kai. Everyday I am in awe of just how many people his little life has touched. I am in awe of the generosity, dedication, compassion, and love our village has shown us. Everyday I am just in awe.
It has sometimes felt like a party around here the past few days and I have wondered if people think we are crazy, but there is no stopping the Kai parade! He has been surrounded by laughter and love and light. I have been surrounded by shoulders to lean on, words to comfort me at the end of the day, and brief moments shared that will somehow have to fill a lifetime of memories.
A few weeks ago I had the opportunity to talk with some families who have lost their children to cancer. I listened as they talked about the life and passing of their babies. Some were young and some were teenagers. Some had passed many years and other only months. I listened as these parents glowingly told not just their child’s background, or history, or cancer story but truly described their life and contribution to the world. They described their personality, like and dislikes, how their one child has changed everyone around them. How their child’s life touched people in a way you can never really realize until they are gone.
These parents told stories of how their children’s friends and school commemorate them. How their communities continue to honor them. How their friends and family will never stop missing them. It was all so beautiful and heartbreaking and comforting since I knew we would soon be part of this group.
Hearing these stories made me wonder what I would say about Kai. What stories would I tell of his life and likes and personality. Kai has had a short but bumpy road and the specifics of these traits are blurry sometimes.
It made me sad to think that Kai hasn’t lived enough to make the kinds of memories people will be talking about for years to come. He never got to school or have a first crush, or build a group of friends that would commemorate him. It made me sad to think that as everyone’s lives move on Kai could one day be forgotten to the rest of the world.
I realized I will one day have to tell people, people who never met Kai, that I once had a baby boy named Kai, and that terrifies me.
I talked to one mom specifically about this fear and she said something that really resinated with me. She said there are certain people who don’t want to or can’t handle hearing my stories of Luca, and that’s ok, but if you don’t know Luca you will never fully know me.
And because she does talk about Luca’s life, people still do know him. People are still getting to know him through her, just like I did last week. (Thanks Meghan xox) I think of Luca often now and Iv never met him. I’ve never even met his mom is person, but we are all now connected through sharing our stories of our little boys. This is what happens in the world of pediatric cancer. It never goes away. We all remember, we all continue to fight for a cure, we all still have hope for the babies that are still fighting. We will always talk of our babies when they are gone.
I now realize there is no mistaking Kai’s impact on the world. He has shown us all so much in his few short years. He has changed me forever and I know I am not the only one.
I would give anything to see Kai have the chance to experience a long full life, but today I know he will never be forgotten. He is ingrained in the hearts and memories of so many. He is bringing people together, building bonds that will last a lifetime.
And so for now we party on. We surround Kai with love. We pack in the hugs and memories to fill a lifetime.
And he is doing a great job indulging us. He has continued to have hours of calm wakefulness. He is able to sleep while three people at a time share his bed and stair at him. And while the pain meds are thankfully working very well, nothing calms him more than being held, grabbing onto a finger and not letting go, touching our skin.
As much as I cherish every moment he is in my arms, i am also thankful for being able to watch him from afar (ok a few feet away) and watch the comfort and love I see when he is in the arms of all who love him.
This has been an amazing time, good and bad. I am so thankful for everyone lifting us up, holding us close, thinking and praying. It is working. Kai is comfortable. We are able to laugh and love and cry and somehow try to make peace with all of this as each day passes.