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.