As some of you may know already, our sweet baby Kai passed away this evening. The little guy until the end was looking out for everyone else, he hung on so everyone could come today and say goodbye to him. He went so peacefully – he waited till Shawn and I laid down in the bed with him, holding his hands, sang his bedtime songs, and we all three fell asleep. When we woke up, I saw that his vitals were starting to slow, and when we went back to him and held his hands, he took his final breath as we felt the sun emerge from behind the clouds. Kai always (as many 2 year olds do) wanted us to hold his hand and lay with him for “just a little bit” before he would go to bed. His passing was a gracious gift of peace, love, and my heart full of feeling his free spirit. It redeemed the brokenness his body had to endure and he is pain free and smiling.
I don’t know why all of this happened.I know that while I do feel peace knowing that Kai no longer has to suffer, my heart is so broken because I love him, and I miss him, and I grieve the moments I won’t have with him here on earth. But, so so many moments in these past two weeks have been miracles and testimonies of love and evidence of God working in our lives for good. I know that may sound weird, but it’s just true. The amount of love and support that we have all received through this is just astounding and the number of people who have been touched by little Kai’s story has blown me away. I know we are all grieving right now but I want to choose life. Kai never wanted to nap or sleep – maybe he knew his time here on earth was short so needed to make sure he got all of the jumping on his bed, playing trains, and running around that he could. Kai liked being awake – I want to be awake too and keep alive Kai’s spirit and life and celebrate his new life he’s living now with Jesus. And I’m guessing he was hungry so I hope he’s filling up on all of the granola bars and “punkin” bread he can eat.
I am so incredibly grateful to all of the staff at Dell Children’s — the list we have of all of the people who have been with us on this journey is so long and each of them impacted our lives and helped us give Kai the best care possible. Thank you to all of you who have been with us – I know that the next few weeks for me are going to be tough, really, really tough and I’ll need help remembering to choose life even while grieving. And I must do that because otherwise I’m just being selfish and that’s not honoring Kai. Kai, I love you. You’re my little gentle warrior and little nuggie, you taught me how to love in ways I didn’t know I was capable and showed me glimpses of the pure innocent joy that I look forward to one day experiencing again with you in heaven. Thank you God for the honor and privilege of being Kai’s mom here on earth. So grateful.
Time has become such a different word for us lately – it’s been only two weeks since this is all began which isn’t alot of time, but it’s felt like an entirely different lifetime for us. Every day, hour, minute has been something we can’t quite fathom but yet time keeps moving forward.
When we learned of the exact diagnosis of Kai’s disease and it’s current state in his body, we knew that time was not on our side. In these past two weeks, Kai has undergone many surgeries, procedures, tests, and many other things that have been in efforts to give us more time. More time with Kai, but really more time to see if we can do something to fight this disease.
Late last night and through this morning, we’ve learned that nothing here on earth will cure Kai. The disease has caused too much damage. God can heal Kai, and we still do believe in miracles, We actually have been reflecting on how many miracles we’ve witnessed throughout this experience. However we of course do not know if it’s God’s will to have him stay here on earth with us for a longer time, So we are now doing everything we can to ensure Kai is as comfortable and peaceful as possible.
As mentioned earlier, Kai has been resting peacefully. Kai has still been resting and we’ve been able to leave the ICU and onto the oncology floor where it’s more calm and peaceful and where they’ve set it up so family and friends can be comfortable and come and spend time with little Kai.
We’re cherishing this time. We got to spend hours holding him today, reading to him and talking to him. He’s surrounded by family and friends. It’s time well spent. I still hope and wish that Kai would wake up and have an amazing story to tell us and the cancer would be gone – what a powerful testimony this would be. But I also know that his story already is such a powerful testimony of Love, Life, and Faith. We love Kai so so much. So much. And we will continue to love him and be by his side and tell him of all the love and prayers for healing and peace that yall are giving him. Thank you so much for that gift!
Kai returned from surgery yesterday and was very peaceful. He was tossing and turning and pulling his blankets over his head just like he does at home (he’s notorious for putting his stuffed cat, named Cat, over his face so when I look at the monitor I just see these two beady stuffed cat eyes). As the day went on we noticed that he was still having some swelling so they took him back to have a CT scan to determine if the shunt was working as it should. The CT scan revealed that the shunt is working as it should, however he is still having trouble with his respiration rate and heart rate and hadn’t woken up from surgery. These are signs that it is the cancer causing him the swelling and issues in his brain.
We will be meeting with the neurosurgeons and the oncologists this morning to discuss more about possible next steps. But for now, we are thanking God for being so merciful and providing Kai with such peace and pain-free rest which he hasn’t had in so very long. He has been resting so peacefully and we are able to hold him and sit with him and last night I squeezed myself into his bed and got to sleep next to him and we had a peaceful night all together.
This morning he’s moving around a bit and opening his eyes from time to time and swatting at the nurses and doctors when they mess with him and so we’re just focusing on spending the day with our sweet baby Kai and plan to read stories and sing songs and help him think of all of his favorite things.
We love our little Kai monkey so much and our hearts are bursting and breaking at the same time with this love, and we just keep praying for comfort, peace, and healing and are so grateful for our time with the little guy who has incredible fashion sense (see below fashion ensemble of swaddle blanket wrap, diaper and dinosaur bib). And currently he’s refusing to keep his hospital shirt/gown on, I think he wants us to check out his muscles.
Kai’s surgery is over and he’s been moved back over to the PICU. The neurosurgeon was able to place a more permanent shunt as a pressure relief valve. The pediatric surgeon was able to install a port-a-cath. This is a permanent access point with a catheter into a vein near Kai’s heart. This will alleviate all of the needle sticks as IV’s should hopefully no longer be necessary.
He looks so peaceful right now. Actually sleeping (thanks to anastesia) and occasionally stretching out his arms. Amazingly, I don’t remember the last time I’ve seen him do that. Something that basic. We love seeing it now.
I don’t think we were necessarily worried about the surgery. Strange that it seems minor now. While waiting we were crying. I think about Kai’s future and I cry. I think about him here and I cry. I think about everything we’ve done since he came into our lives and I cry. The one thing I was sure of, though, is that as soon I saw him I would be smiling. Kai buddy always makes me smile.