Admittedly, I think Shawn and I are at a loss for words today. In all honesty, this morning Shawn and I were on our knees wondering if we could even do this – how do you go to a party you never thought you’d have to host? But, then we thought about Kai – this is his party and we are given the opportunity to honor him and celebrate him, so we prayed for strength to be joyful and remember his life and smile and amazing spirit. And God answered. He created a celebration that we could never have imagined and we are just absolutely overwhelmed with how many of you came to celebrate with us from near and far and the incredible support of so many of you who helped make Kai’s party so wonderful. A friend commented to us that during the celebration she heard all of these joyful noises like at a kid’s party – she saw people smiling and heard the kiddos rustling the balloons or drawing on paper and that makes Shawn and I smile. We hope/imagine that Kai was doing something similar and enjoying running around with his Thomas or Elmo balloon and making grand circles on the big sheets of paper. Kai Kai, we love you and we celebrate you today. God, thank you for the amazing life you created in Kai to share with all of us, we are forever grateful and so thankful for that joy. Thank you again to all of you for helping us along on this journey.
Thank you Doug and Amanda for creating this beautiful video celebrating Kai’s life.
Thank you everyone for your prayers, encouragement, empathy, warmness, messages, food, company, hugs, tributes, and so much more. We would not be able to go through this without you and just thank you so incredibly much. Thank you for being so generous with your hearts and spirit.
We wanted to let you know that we will be holding a celebration for Kai this Monday, March 24 most likely at 1:45/2:00 ish in the afternoon. We are finalizing a few details and will post the exact information later tonight. We do want to let everyone know that this will be a celebration of life, so this will be kid-friendly with ways that Kai’s friends can help celebrate him and remember him if they wish.
Thank you again for all of your support and we’ll post more information tonight.
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.
I find it completely remarkable and overwhelming how support, encouragement, and prayer we’ve experienced this past week…and that’s really only the support we know about through texts, phone calls, emails, and social media. Much of it is from people we have never met, but all of it is from people who care.
It hasn’t even been 24 hours since the proverbial bomb was dropped. I know Aki and I have both gone to dark places and it’s amazing that every time we get pulled out by everybody fighting for Kai or by Kai himself.
Kai is doing well right now. We still need to wait for 2nd opinions. We have heard stories of 2nd opinions being life changing. We have heard of connections elsewhere in the country that can provide 3rd and 4th opinions and may have expertise specifically with ATRT. I even heard that there will be a prayer for Kai by the Priests at Mass at Notre Dame on Sunday.
Thank you, all!
And of course one of my favorite pics of Kai, Maya, and Aki. 🙂