I hate that every thought I have, every event I go to, every changing of the seasons all I can think is “this time last year…I was with Kai…” And now the thought that soon I wont be able to say that any more, is devastating in a whole new way. As Kai’s anniversary approaches it is really hard to believe almost an entire year has gone by. I don’t want to believe it. It doesn’t seem right. Some days I feel like it was yesterday and somedays it is uncomfortably far away. It is hard to think of how different my life is without him, yet I feel like he is still in my life everyday.
Today I woke up and looked out the window and could not stop thinking about this time last year.
This weekend last year Kai and I played. I stayed up late making him a Halloween costume. My mom spent the weekend with us to join in the joys of her grandsons 3rd Halloween. We met friends at the park for trick or treat, went to a cancer kid costume party and attempted pumpkin picking for charity.
First stop was the little park in town where our (typical) mom group had organized a costume party. I rushed all morning putting the finishing touches on Kai’s costume and putting together some ‘healthy’ treats to share. It was a beautiful Saturday morning. Crisp fall leave blowing off the trees as the last late rays of summer sun warmed us as we stood on the wet wood chips, soaked from the rain the night before. I wore a t-shirt and flip flops. It was too warm for Kai to wear his mommy made Harry Potter scarf but eh didn’t seem to mind. I remember every detail of this weekend last year. It is the last weekend I remember before going into the hospital for the last time.
I watched as whole families, mom, dad, toddler, newborn, poured out of mini vans racing towards their friends on the swings, as we stood awkwardly at the edge of the playground. The dads gathered by the cluster of strollers, rocking and swaying the newborns wrapped and strapped to them. The moms stood back prepping the treat table, wiping noses, disassembling costumes for better speed down the slide. Kids jumped in muddy puddles. I stood in the warm sun with Kai in his wheelchair by my side, playing referee to the conflicting thoughts fighting in my head….
What a beautiful day to be outside, I thought. I am so happy to be able to give Kai this experience. I can’t believe I was able to make his costume and bake a treat this morning. This must be what it feels like, to raise a child. I couldn’t have done it without my mom. I am happy to have her here to share this moment with her grandson. I am just happy to be standing in the sun.
Our life had been extraordinary for a long time by that point, but this particular moment felt even more so.
This weekend last year we were truly living day by day.
This weekend last year I knew we would not see another Halloween or birthday. By this time last year I knew Kai was dying.
The pressure of knowing this forced me to a manic state. You start to live like you are dying – rushing around from place to place, party to party as to not miss out on one minute of memory making opportunity. I tried to convince myself that this is what typical life with a toddler feels like. You go to parties and pick pumpkins and make memories. But with every click of the camera came a sad stare from across the way or consoling hug from a friend, and the truth became harder to and harder to avoid.
We were invited to this party because Kai is sick. We are making these memories because we don’t know how much time we have left. Every time my mother asked people to squeeze in close to Kai for a pic, there it was glaringly unavoidable…He is dying.
We must document this moment of his life because we don’t know how many more moments we will have.
I tried to ignore it as I chatted with the other moms. I cooed over the newest newborns and admired the other clever mom made costumes. I smiled as I stood in the warm sun with Kai in his wheelchair by my side, playing referee to the conflicting thoughts fighting in my head….
Will this be the last time I make him a Halloween costume? Is he in pain? Does any of this matter? Why are we here at a park he can not play in trick or treating for treats he will never eat? Is he really going to die? Please don’t let him die! I don’t care if he ever jumps in muddy puddles or clammers for candy as long as I can hold him. As long as I can keep him safe and comfortable and happy. I will do anything. Please STOP taking pictures and staring at me longing across the park as if he is already dead.
A group of 3 and a half year olds came walking over to Kai to say hi. A little girl I had known for a while picked up his hand and turned to her friend and said
‘This is my friend Kai. He is sick and he can not talk”
They huddled around him and looked up at me for an explanation. I told them he was sick but he really liked that they came over to say hi to him. They asked about his costume, the ‘Z’ on his head, his little owl, his glasses. Then they ran off to play on the jungle gym.
Later that day the girls mom messaged me to apologize for what her daughter said. This mom was terrified that somehow her 3 year old had offended me, upset me, said the wrong thing. In the moment at the park with the kids huddling around Kai I remember thinking how refreshing it was that this mom had told her daughter about Kai. That this little girl was not afraid of him. She felt confident to tell her friends about him and for me it was a moment I will never forget. To me it was a moment where I could see that Kai’s tiny little life meant something to those around him. Kai had a friend and that little girl wanted to introduce her friend Kai to her other friends. And while that group of 3 year olds knew Kai was sick, to them he was not dying he was just here to play.
I am so thankful for this time last year with Kai. The last days we spent together living his life. Kai made many more friends in his 2 short years than I realized at the time. Every now and then I will receive a messages from a friend, a story of their children talking and remembering Kai and it fills me with such joy. These stories, these children, feed my soul – usually on days I need it most, like Kai has planted these little seeds in your children. A way to get the messages back to me. There is no greater gift at this time than seeing his life through there eyes.
There is no footprint too small to leave an imprint on this world.
Keikikai 
KERRI your writing about Kai is sweet, heartbreaking, life affirming and amazing. Your heart is so open and alive. I love you. Kai is a lucky boy.
You had a beautiful little boy who is still touching lives. I can’t imagine the pain involved in saying goodbye to such an incredible angel. And you are an incredible woman to continue fighting for other children with similar situations.
Kerri, almost every time we have dinner, Luke looks out of the window and says hello to “Kai’s star”. Randomly, when we drive to the daycare he asks me if I remember the little boy Kai.
Kerri you are in my thoughts constantly. Kai is mentioned every night by my son during his prayers. You are so right. One little soul touch the world in an enormous way. And my feeling is you are only aware of a very small amount of just how much he did. I believe it is even bigger than you can imagine. Thank you for bringing us such a wonderful soul. XOX
Kai has made such an impact on so many people who knew him and even people who never met him! He has such a beautiful heart and I think about him every day, I still have his picture in my car above tucked into my sun visor. Its always such a beautiful reminder to see his face while the bright sun beams down from the sky around his smiling face. He will always be in my heart. I love you both ❤
Your post are wonderful. Its also heartbreaking. Your a strong women and you will see these days through. Kai is a special little boy that will always remembered in hearts forever. May god bless your days and help ease the pain.
While our friendships won’t always remain the same… you know in your heart all those littles won’t ever forget their Kai no matter how their lives have changed or continue to change. They all know him, love him, and remember him in their own ways. It is the moms who never know the right thing to say, kids have a way of communicating and getting along that is beyond us. ❤
I remember you sharing Kai’s Halloween picture last year. Sometimes it’s hard to believe that a year has passed. Kai, and you, remain in my heart and in my thoughts. Sending you love and hugs,
MP
Your story remains in my heart-
Kerrie,
There I no doubt in my mind of the numerous lives Kai touched in his sort time. I knew him for only a month and the impact has been unbelievable. I think about him often and cry for him as much, and for you and your family as well. I hope you find peace and consolation in what an inspiration you both have been to many.
Susan from CS
Momma I really don’t know what to say other then I am so sorry – all that is happened is so unfair, not right. I wish your Kai was here with you, like a I wish so many other kids were with their mommies and daddies, where kids belong. I am so humbled by you moms that have dealt with such a loss and your amazing compassion to want to help others – what you’re doing with Kai’s Village is amazing. What a beautiful legacy for your beautiful son. I send you love and strength to get through these difficult times. xoxoxo – Donna
Oh mama ❤
Kerri, I’ve never met you, but you and your son have deeply touched my heart since I first read your blog. I keep learning from both of you — you, such an amazing mother, and that beautiful, precious boy. Thank you for sharing the gift of his story (and yours) with me. Sending love your way…
Kai is always in our thoughts. My son is a year younger than Kai and met him once. I speak about him often and when he sees his picture he says who is that? I say its Kai and he says, “Oh, Kai?”, like he knew it – just needed reassurance it was so.
Please know that Kai lives on in all those he touched ❤
I am so sorry for your anguish. It has been over 20 years since I lost my little boy and I remember how hard it was the first year and every one thereafter. Grief is an unbearable journey and I am holding your hand. You beautiful angel is, too.
Beautiful Son & Beautiful Mom:)
We loved Kai’s outfit at the Halloween Party. We remember that day like it was yesterday. Both of you are extremely special and hold a special place in our hearts.
Thank you for sharing your beautiful thoughts with us. Thinking of you and Kai
Kerri, thanks once again for bearing your soul in memory of Kai! I hope you realize how much he was and is loved. He shared something special with the world without even knowing it. Missing him too!
Thanks for reaching out to “your” village Kerri. Luke is doing well, always complicated, but well. Luke had his first “kids” preschool birthday party this weekend. Like you mentioned kids were with Kai; kids are also very accepting of Luke, and love him and want to be his friend. He loves his little friends as well. Preschool is a great place for him. Luke is dressing up as Harry Potter this year for Halloween. I thought of you and Kai when we chose this costume. I’m not as good as you…knitting a Hogwart’s house scarf…I bought it on Amazon! Now I have 3 1/2 days to make a Griffendorf robe for Luke! Guess I better get sewing. Thank you for sharing your fond memory of the fall with Kai 🙂 -Donna
I think of you often and am glad you shared this post. Others have written about how large the scope of others who have been touched by your story is and how you probably can’t even imagine how far it spreads. I would have to agree. There are so many of us who have never met, yet you are a part of our lives. Kai’s influence on us is eternal.
Kerri,
You are so open, kind, warm, strong and most of all nothing short of amazing. The way you want to help other pediatric cancer families is heart warming and inspires me!! Thanks to beautiful Kai our paths have crossed and I’m truly blessed for that xoxo