This morning Kai had some nice alert awake time and started throwing us all for a loop again. His breathing was even he was looking around. As our visitors rolled in everyone was kind of shocked that he was looking so good.
Shocker, Kai has fooled us again!!
While we were all happy to have this time, I wasn’t sure he was really any better off than the day before and just as I suspected he became less aware and awake as the day went on.
Around 9:00 tonight he started to gasp and looked like he was in pain. I held him up and I really thought he was going to throw up. As I held him his face became more distorted, his body began to pull and his eyes began to shake. I would say it lasted 45 seconds before he started to calm and then he let out one more cry and twinge. After that he fell right back to sleep. His lips were white and his face was almost green.
After it happened I felt it must have been a seizure. The nurse only caught the tail end but agreed that it likely was.
We have questioned seizures for so long with Kai but I never really felt sure until today. Of all of the things we have been told to expect with this end of life process this was the one I was hoping we could avoid. I don’t know why the thought of seizures was worse than most other things in my mind, I guess because they can be so unpredictable and there is not much we can do at this point to control them. And although I don’t think he was in pain it was scary to watch and obviously took a lot out of him. I was hoping he wouldn’t have to feel that. I was hoping we wouldn’t have to see that.
Last night as we saw the changes that were happening and we all became scared that the end actually may be nearing I had to remind myself that it is probably going to get much worse. Hopefully his pain will continue to be managed well, but we will see bigger and more clear signs as time goes on. I remembered saying the same thin to myself when I was in labor with Kai. Every time my contractions intensified I tried to tell myself to adjust because this was only the beginning, it is going to get much harder than this… and it did… but I also showed up at the hospital at 8.5 centimeters convinced I was going to be sent home… Because I had convinced myself it wasn’t that bad.
In the beginning and the end I can only tell myself to hold on and tuff it out so long before Kai just takes over and I have to let it all go and do things his way. This is the power of childbirth and apparently child death. I am merely a vessel to keep him safe and warm and get him where he needs to be, he will take control over the rest.
Keikikai 
Seizures are very scary. We are with you and Kai! Love you!
((HUGS))
U R IN MY THOUGHTS AND PRAYERS ❤ WE LOVE U BOTH AND KISS KAI AND I PRAY HE WILL REMAIN PAIN FREE ,GOD BLESS
Kerri,
My heart breaks for you… Praying Kai stays comfortable and peaceful.
Alise
Your strength amazes me!!! Prayers for Kai and your family…peace and calm
No words are enough but know that so much love, support and prayers are with you all.
My heart breaks for what you are going through. For what you have yet to go through. Much love and support to you as you find the strength to be what you need to be for Kai, and to simply do what you need to do for yourself.
My love for Kai grows stronger everyday…what a brave little boy! I haven’t a doubt in my mind that Luca’s Light and love are guiding him…and I pray that he will continue to be free of pain. Kai will always have a special place in my heart…and I promise to always share his story…..just as I do for Luca! Sending love and peace. Xo Janice (Friends with Meg Delisi)
Thank you so much for sharing you world with us. You write so beautifully. I think of you and Kai so often, especially as I lay in bed at night nursing my baby. I think of you snuggling your little Kai and am so amazed by your strength. I hope that things will be peaceful for you and Kai in the days ahead. You will be in my thoughts as I send you and your family wishes for comfort and peace.
Oh Kerri I wish there was more we could do. I have been praying so hard that Kai doesn’t suffer…that things go peacefully as they can. My heart aches so much for both of you. Sending love and light. I hope Kai gets through the night in comfort…
Im so glad u have decided to share Kai’s story with all of us. He is such a brave lil boy. Me like many look forward to ur updates on Kai nd the lovely pictures. No mother should have to endure the pain u are. U are truly an amazing mother. I know the pain of losing someone close nd special. I have lost many many family members to the horrible disease. I myself am fighting my battle with cancer. I was diagnosed a year ago with metatstatic bone cancer. so i know ur pain. I pray God wraps Kai nd ur family in his loving arms. I will continue to say prayers for sweet Kai nd ur family. Just know there are many people praying for lil Kai. Much love from california.
You are an amazing mother and Kai is in the best possible care on the journey you are all taking together. Praying for you all for strength during these times. And sending you love and light.
Kerri, I read your blog everyday. Thank you for sharing `your journey with everyone. Kai is a very special, strong litlle boy. He and your entire family are in my prayers. God has blessed you with a tower of strength. Kai is very fortunate to have such a great caring, loving mom. You have demonstrated that to the fullest!
Hugs, kisses and prayers to you !
Kerri, I pray Kai has a peaceful journey. As a parent we are supposed to be in control and keep our children safe. I know it must be hard to give up that role to someone so small and fragile. The truth is I still believe there is an enormous soul in that little body that’s struggling to get out. That soul will guide you and protect you now and always. You are right. Kai is in control. Trust that he will do well and leave you with peace.
Jen
Dearest Kerri – Thank you for continuing to share Kai’s story and your thoughts. He is a beautiful Boy with a beautiful Mom. Continuing to hold Kai, you and your family close to my heart. Sending love, hugs and calming thoughts. MP
Really hoping that this is the only seizure you will see. Sending so much love and prayers. You and Kai are both so strong and amazing.
We are all blessed to have this window into your little boys life and in return you are getting prayers from around the country, if not globe. I’m sure the time of year doesn’t help at all, but you have an amazing mindset and are definitely being that rock that Kai needs in this period of his journey. Just try to find peace in that, it has been proven that the power of human touch can comfort these sick children and that’s what you are giving him. Hold that baby every second you get, my prayer chain is still in full force sending lots of love, and peace your way from all over the place. xoxo, Jackie (Friends with Christie H. and Nicole G from MoCo)
Your ability to put words to a trial that no living person should ever go through is amazing. You have such an amazing insight in being able to draw such comparisions and try to make sense out of such a senseless tragedy. Your story has touched more hearts than you will ever know. Kim (Alex’s pre-k teacher)
Seizures are scary because they look scary. Apparently for the child involved they are not so bad. Get some medical information about that from the doctors. Love, Elsa
I just want to say I love u! To hang on and pray. Remember that the doctors aren’t the one who decide when its time to go. It depends on when god wants you to spend more time with ur son. I hope that everyday u spend with him u cherish and remember all the good things in the day. I am praying
My heart goes out to you and Kai and your family today! My thoughts and prayers are with you all. You are an amazing MOM and Kai is an amazing little guy you both are so strong. xoxoxoxo to you both! Thanks again for sharing your journey.
As you are there always for Kai, we are here for you. Even those of us that you have never met. We think of you every single day. Please know that although we will be with our families tomorrow, we will be praying and thinking of you even more than usual. You are doing everything that you can for Kai and you are not forgetting anything. There is only so much any of us can do for ou rchildren, healthy or otherwise. They all have their own way. We guide them as much as we can. Holding you close in our hearts.
Prayers for you and your mom.
Kerri,
Thank you for continuing to blog about your experiences. We continue to pray each day for you, Kai and your family. The part at the end about you being a vessel for Kai really got me. You are so strong and an amazing mother. I hope to meet you one day.
Praying for a peaceful loving day for you and your sweet boy
Blessed, wonderful Father. I know that everything from You is good. That is why I continue to pray for the full healing of this precious little boy. Please give this family a miracle that can only come from You, Lord. Please heal Kai so that he can live a full, healthy, Jesus loving life!
As the Thanksgiving holiday approaches I’ve spent a lot of time reflecting on the lessons in your blog. The first and most obvious is to live life in the moment and not take our blessings for granted. You’ve often compared the process of guiding your child out of this life to bringing a child into the world. The ‘reverse nesting’ of collecting his things, the physical pain of labor and the emotional pain of letting Kai go, that long car ride when you bring your newborn home from the hospital and the longest ride when you have to leave without your baby. I’ve learned that as much as you prepare for what’s to come, you’re never really ready for it. I’ve learned valuable lessons about how our society treats the disabled, how the stares and looking away are so hurtful. I’ve learned the weight of the impossible life and death decisions parents are forced to make for their children. I’ve learned the importance of small victories. I’ve learned the power of a mother to be a voice for her child. I’ve learned when a community comes together and sends peace and light from around the world amazing things happen.
This blog is an amazing gift and testimony to your love for Kai. Hopefully other parents struggling with a new diagnosis or the bereavement process will find this and it will help them. I don’t know what lies beyond this life but I believe your keiki Kai, your ocean child, will become a part of the magic of the universe. The matter and energy of his being are set free and incorporated into the world around us. When you walk by the ocean or wherever your travels may take you, know that he will be there with you not just in spirit but in a very concrete way. I hope that thought brings you some comfort.
Keeping you all in my thoughts, but especially you, Mom. Stay strong. There are people out there thinking of you, people you’ve never met, who are moved by your commitment to Kai’s well-being. Giving our kids good lives is our job as parents; giving your kid a good death is not supposed to be part of the bargain. Your focus is absolutely in the right place. Kai is very lucky you love him so much and so selflessly. Hold on.
Kerri, you are such a beautiful person, to be able to love so completely. Just as Kai is blessing you, you are blessing him. Nothing can be more painful than what you are enduring. So many prayers and hearts are surrounding you with love. May you all have comfort, peace, happiness and love. Thinking and praying for Kai and you often.
We will all be praying for you guys this holiday season, you are always in our thoughts miss you all so much lots of love, Sophie
Your strength and poignant observations aout the process of living are touching on a daily basis. I am thankful to know you, through your journey, and to be able to tell Kai’s story.
Broken Heart……I wish you didn’t have to go thought this with your baby…..praying for you and Kay…..
I have experienced a lot over the past 10 years. Brianna’s brain tumor experience and my husbands death. I can tell you without a doubt that seeing Brianna have a grand mal seizure was one of the most terrifying things I have ever seen or experienced. I’m so sorry that you had to experience as well. We love you. There are just no words my friend. Just know we love you and are praying for you and Kai……
So many prayers for peace and comfort. Kai is especially lucky that God chose you for his mama. God was wise to have given him someone with incredible strength and sweetness to guide him on his earthly journey.
Dear Sweet Baby Kai & Kerri~
My heart is breaking for you both. I, too, am the mother of a two-year-old son and cannot even begin to imagine what you are going through. While I never had the pleasure of meeting your precious Kai, his story has literally changed my life. Never again will I take a moment for granted or pass up the opportunity for a kiss or hug. I am thankful for every day. My kids and I pray for your family each night and ask God to bestow his peace upon both you and Kai. Your baby has touched my life. Thank you for sharing his story. God bless you both.
tears in heaven by Eric Clapton
Would you know my name
if I saw you in heaven
would it be the same
if I saw you in heaven
I must be strong
must carry on
cause I know I don’t belong
here in heaven
would you hold my hand
if I saw you in heaven
would you understand
if I saw you in heaven
beyond the door
there’s peace I’m sure
and I know there’ll be no more
tears in heaven
I don’t know if these are the correct lyrics
and there are surely more stanzas
but this song expressed it nicely for me when my son died
and still does
you will find it on youtube
Eric Clapton also lost his son tragically