My heart and mind have been swirling and churning and aching these past few days and honestly I’m not quite sure yet what all of those thoughts and emotions are. I feel restless but unsure what to do or where to go. After pacing outside for a little while it just came to me to come and sit in Kai’s reading chair where we spent each night reading a book, or two, or three, or “last one”, “one more time”. 🙂 Him in my lap or sometimes he’d insist we squeeze in side by side with Cat and owls and bees as well. I felt compelled to write on here but I’ve started and restarted many times and nothing feels quite right that I should post.
So I think maybe for now, I will just share a video of Kai Kai and also I wanted to be sure and say thank you so much for all of you who came out to the Head for the Cure Race in Dallas this weekend. Thank you so so much for your support and being there for Team Kai! We appreciate it so very much.
I had Shawn pull up the videos on the tv today so I could see him. I needed to hear his voice and see him move and jump and play and laugh and squeal and run around. I needed to see his life. When Maya woke up we set her in her chair so she could see the Kai videos on the tv and she squealed and smiled and clapped and kicked her legs. To her it wasn’t a video – she was with her brother and for a moment my heart swelled because I felt the joy of seeing the two of them “together” again.
That feeling reminded me that Kai is still alive and that my heart is growing with more and more love for him and that his sister is growing in her love for her brother and knowing her brother. In the midst of all that is broken, set apart or distant in this world, in no time at all, it is all brought together by a memory of love that still remains and is growing and full of life.
So I share this little video of Kai – I think he’s about 18-20 months old here (I don’t know where to find the date tags on iPhone videos).
Thank you, thank you, thank you so incredibly much for all of your prayers, messages, support, and so many things that help lift us and carry us forward each day. Thank you so, so much.
Sun’s out, Kai’s out! I hope this brings a smile and a little light into your day!
I keep thinking each post will be the last post but then I keep feeling the nudge to post an update of some sort. I think I’m pretty nervous about this one, but maybe that’s the normal fear in being honest.
Through all of this, I’ve realized a lot of old “wants” and desires don’t really exist or mean very little to me now. But, I still want a lot…maybe even more than before.
I want to see Kai’s face, I want to feed him breakfast and fix his lunch. I want him to show me his new trick of how he’s balancing on one leg then does his variation of an Irish jig to switch to the other foot. I want to put his socks on his little feet and help him put on his “daddy” shoes (his running shoes that look almost like his dad’s). I want him to tell me that Maya needs a diaper with Elmo on it and not the one with just a heart. I want to be so exhausted from the day because I’ve been carrying him and Maya, running down the street after him, or tired from the climbing the stairs multiple times because he’s somehow made himself poop twice during nap time in efforts to stall sleeping, and so I must run up and down the stairs to get rid of the “woo-wee stinkyyyy!!!” before our house smells of… not nice smells. I want to have him sitting in my lap. I want to hear him say “car cominggg!” in the slightly Russian accent he would get when yelling that a car was coming down the road. I want to read him a book. I want to clean up the remnants of his day and see how’s he built toys into towers and trains. I want to peek in his room and see him sleeping there with Cat and his owls and bees.
But I can’t have any of these things.
And it hurts. It hurts so bad and I want to flail and throw a tantrum like a 2 year old, but that won’t give me any of those things. So I struggle. A whole stinkin’ lot. I really don’t know how to do this. But I must.
All of these things that I want are Kai’s life — and that still exists. Not in the form I’d prefer, but it exists because so many people still love him. I want to have my “old” job back as his mom taking care of him every day. But I still have the job of being his mom, but it looks different now and I’m trying to learn how to do this. I want to keep Kai’s memory alive. I want to always, every single day, remember his joy and tell his sister about him so she will know him as best she can. I want to give thanks for the gazillion things I have to be thankful for. I want, with every ounce of my heart and being, to make sure that Kai’s suffering, our suffering, anyone’s suffering, is not wasted and that I will be open and God will use me to do good in this world. He can make so much more good than there is pain, even if we will never be aware of all the good that happened because of this. I know He is doing that and I want to keep wanting and living with that hope that good will persevere and redeem the suffering.
Hearing Kai laugh makes me always laugh and it turns out he made himself crack up alot….especially with the anticipation of being tickled.
We’ve been missing our little buddy a lot this week and have been laughing through tears enjoying seeing old videos of Kai Kai. I love this video because it reminds me of how much joy we got from such a simple thing… and also why he had the nickname of “the letter d” for a while because his little belly is what was always leading him around 🙂 This video was taken when Kai was about 11 months old. Maya has also started learning how to make these sounds and it makes us smile seeing her laugh about it and remembering Kai. Love you Kai Kai. so so much.
I’m not sure why I’m posting this here. I sat down to write a few notes to Kai…for myself…and here I am copying it here. Feel free to skip this and go straight to a new video that we’ll post.
I love you so much. I miss you so much. I am crushed that you are not here to enjoy life here as well as to enrich the lives of everybody that loves you. You are in such a better place, but it still hurts so much. It’s surreal that you were here and then so quickly you left us. I so much regret that I wasn’t able to have an “adult” conversation with you about how much I love you. I hope that you know that was the case. I so much regret that I wasn’t able to shield you from the pain of this disease. I so much regret that if we had been as aggressive as your disease that we could potentially could have caught your disease sooner.
I think about you all the time. Sometimes I can only think about the end. That is incredibly painful, but that should not define you. That was a short portion of your life. Up until that point you were a tremendous energy. I love that you were reserved and often liked to do things on your own, yet you always demonstrated pure sweetness and innocence the way you cared that everybody else was taken care of. I loved your willingness to share (usually) your toys with your friends.
I loved your insistence that you share a bite of nearly every snack with mom or myself, regardless of whether it had been on the floor or already in your mouth.
I cherish the love that you showed for your sister, always wanting to include her and do whatever you could to help her stop crying.
I love that you couldn’t watch more than 2 minutes of television without losing interest, yet you could endlessly watch YouTube videos about construction vehicles, dump trucks, and garbage trucks.
I love that some of those videos were in Russian and that once or twice you referred to a construction vehicle by its Russian name (we assume).
I love (in hindsight) that no matter how exhausted I was in the morning, I could never convince you to lay in bed with us and rest. Never.
I love that you could be playing outside, near your friends, and flip a switch deciding that you were done and it’s time to go inside and eat. I can see that Maya will inhale her food as she grows up, just like you.
I love that you still insisted on milk every single morning out of a baby bottle, for reasons that will forever be unknown.
I loved coming home from work and hearing you yell “Daddy!” from the other room. I love seeing Maya make the same face today every time that mom enters the room.
I love that I could not take out the ladder around the house without you insisting on climbing up with me.
I loved watching you on the video monitor as you sat there in the morning waiting for your alarm clock to light up green, meaning it was okay to get out of bed. We still see your alarm clock light up green.
I love that you grabbed canned drinks out of the kitchen and handed them out to us and to visitors, regardless of whether or not we wanted them.
I love the videos of you and mom that she would send occasionally. I love watching them today.
These are all small things. But these are the everyday things that are no longer there. I miss all of these things and I miss you. Life is far too quiet now, but I am grateful that we still see glimpses of you in everyday life. I know that your friends are still talking to you and I know that you are still looking after them.