It’s hard to believe three weeks ago Kai had a fever and we drove in to the hospital at midnight and we have been here ever since.
We have been living in this hospital for three weeks!
Kai and I have been sharing this bed for three weeks. Mark has been driving in and out of the city, traffic and tolls and parking and gas for three weeks. My dog has been at my uncles, my mom has not been to work, we have had meals on our doorstep, messages and prayers, and visitors everyday for three weeks. I have not been home or driven my car or turned on the Tv.
There have been countless ups and downs. Peaceful times and scary times and everything in between. I have had to make decisions and face things no parent should ever have to face. I have had to learn to let go while still holding tight and ALWAYS expect the unexpected.
There were two distinct nights that I really felt I was loosing my baby. When everything else in the world stopped. When I couldn’t breath from the thought of his least breath. But he is still here.
The first was the thursday we decided to stop treatment and the second was this past Thursday, thanksgiving. Since thanksgiving I feel it all the time. Every minute that passes i loose a little more of him. I sit here with my ear pressed against his chest listening for the next breath. Watching from across the room, waiting to see that tiny little rise in the blanket as he inhales. Sometimes it is fast and shallow and sometimes there are long pauses, but each time he exhales it feels like it could be the last time.
I imagine it will happen peacefully in the quiet of the night as we lay next to each other asleep with no one else around….i will be holding his hand with my face pressed against his cuddled under the covers just like every other night. I wont have the agony of watching for that next inhale. We will just fall asleep and our nurse will have to wake me to tell me he’s gone. I imagine it will happen this way…but know this is probably a fantasy.
There is nothing quiet or easy about watching him slip away no matter how slow or how fast or dramatic or peaceful, day or night. And I have certainly learned by now that whatever I try to prepare for, come to terms with or accept, Kai will find some way to mix it up, keep us on our toes and let us know that only he is in control of his destiny.
This is not about me or my choices or what I want for him. I can say I am thankful he is comfortable and that I feel like I made the right decisions but I don’t want any of this!
I am thankful he keeps reminding me that there is nothing more I could do. That no matter how many decisions I have been asked to make ultimately he made the decision for me. This is Kai’s life that I am living in and there is nothing I can do except be here. Hold him, watch him, support him, love him and let him be who he is. Just like every other mother in the world I want what’s best for him, but I do not control his life…or death.
Kai decided to sleep all day today. He did not open his eyes this morning even for a minute like he usually does. He didn’t wake before his bedtime meds either, he just slept. He had a few coughing fits where his eyes popped open, but he was not awake. Yesterday I could bug him enough to get him to wake but but he is very, very tired now and I have to just let him sleep, peacefully in the quiet night, just him and I, with his hand in mine and my face pressed up against his…just like every other night.
Keikikai 
Hugs, prayers, love sent to you and Kai! xoxoxoxo – Kai is very precious, and you are one very special Mom. Thank you for the update!
You are what’s best for Kai:) I’m reading all your posts along with the other thousands who care and we’re all here with you & Kai in his precious moments over the past three weeks. You’re an amazing Mother! XO
Thoughts and prayers are with you. I will not even begin to say I understand how you feel. I come here several times a day to see how Kai is doing and hold my breath as the newest comes up on my screen. Kai is such a precious child, he has changed how I look at the world. Thank you for sharing him with me. God Bless you. Keep enjoying every kiss, snuggle,smile,breath and moment. xx
We are with you in our hearts and we are praying for God’s hands to hold and guide you through this most difficult and agonizing journey that we can only begin to imagine. You are such a good mom, never doubt that ever! Sending love and hugs and prayers for strength, comfort and peace for all of you.
Melissa
Prayers for the little warrior and his mama. Sending much love.
I recently found your blog through a friend and I’m so very thankful to have found it. I can’t even begin to say I know what your feeling. I can say this though your little guy is a fighting little miracle and I truly hope for the best. I have 3 children myself 1,3 and 5yrs old and recently I have become more aware of how common cancer is in our young little people. I don’t believe much in prayer to be honest with you but ever since I have read about your little guy I have been feeling this urge to pray and i have been praying and hoping his little body will come back and you and your husband will find the peace you deserve with your little warrior. Thank you for sharing your blogs with everyone…I’m sending lots of love your way and hope tomorrow will bring lots of love, strength, and healing to you all…xoxo
You are an amazing mother, Kerri. He couldn’t ask for anything more than what you are. Peace and love to you both.
Prayers and more prayers.
Thank you for sharing Kai with the world! I share his story EVERYDAY and am so very thankful that he has come into my life! He will FOREVER be in my heart!
THANK YOU FOR SHARING KAI WITH US ! I SIT HERE AND CRY FOR YOU AND YOUR SWEET BABY BOY AND WHAT U R AND KAI ARE GOING THUR MY HEART IS BREAKING , I PRAY FOR PEACE FOR U AND PRAY TO KEEP THIS ANGEL PAIN FREE .I THINK OF KAI AND U AND SENDING HUGS AND HOPE !
I am praying through the night for you. with blessings and love -Sylvia
You’re all in my thoughts and in my heart everyday, I am so amazed at your Kai and I’m amazed by you, I’m a stranger ‘looking’ in on your world and I see a very strong, courageous, loving, dedicated Mother. Your bound with Kai is an unbreakable beautiful love.. His spirit is so strong and kind. I am praying always.. Bless you all.
I know your pain and am so sorry. My prayers are with you. May God provide you with all you need and give you the grace for every moment.
Sending all of my love. You are such a vivid and soulful writer. I **feel** every word. It hits me so deeply. Maybe because Kai and Max have similar diagnoses and were diagnosed around the same time. I can’t help but feel every single thing you say. You take us there. I am so deeply heartbroken for you and I know you’ve done everything. Kai is showing us all the way, his way. The bond of your love — there’s nothing like it. But how are we to shepherd our own babies through this? You show us what the deep love of motherhood truly looks like. Love ‘ya, Momma. Here, for you, always!
Continuing to hold you close in my heart. Sending hugs, love and peaceful thoughts.
MP
Kerri, you know Kai is on my mind and in my heart every minute of the day, but last night I slept, only waking once or twice…I had no idea what that meant, but I was grateful for the sleep….I am just going to contonue to pray and send you massive love and keep our candle lit….So much energy is being sent to help Kai stay comfortable. People from all places stop me to tell me how much they are thinking about him and praying for him, so very many people are in this with you….Hope that helps a bit to know…
Love you much !!!
Alice. Emily, Lexie and Max
Sunday night I asked for prayers from my teenagers in Confirmation. God hears from children well and I knew they would care enough to pray hard for Kai. We pray for a peaceful slipping away so no more decisions need to be made. We prayed that God would be gentle in His way and bring him home so Kai’s pain is over. We know then our prayers will have just begun because an even greater pain will be created by his absence.
We admire and love you and ache for you.
Love, Carol Lee
Kerri, I wish your family didn’t have to go through this. I wish God would take all the pain away. The problem is we are not in control you are right. Reading all your blogs and getting to know you, you have taught me such important things. But one of the most important things you gave me is an appreciation for the present. Idle worry over things that don’t exist is such a waste of my time. Time that no one really has infinite amounts of or control over. For that I thank you. Thank you Kerri, for all you have done for so many. You are an angel.
Jen
I wish there were words to make this pain go away, but there are none. I recently watched my Grandmother slip away, and I must agree there is nothing more painful to watch, except watching a baby do this! You are an incredibly strong woman Kerri. The decisions you have made and the pain you are feeling has made you a new person. Though you may not know it, but you are touching the lives of so many people by sharing your story and you will touch the lives of many when Kai is in Heaven. You are not alone through this journey. You have been blessed with a wonderful family supporting you and strangers who feel your pain through your words. My family and I pray for you, Mark and Kai daily. Please stay strong.
Kelly
Oh Kerry, you are amazing.. How many lives you and Kai have touched. Your writing has made that possible! Keep doing what your doing, your doing GREAT. Snuggle that boy, there is no doubt he doesn’t feel your love. Every touch you give him, every kiss, every “I love you”.. He knows, and it’s enough for him, it’s all he wants and is fulfilled. He has YOU and he is blessed, as you have been so blessed with him, sick or not. I pray every day for all of you ❤
Christie
Kerri,
There are no words. Know that my thoughts, prayers and love
are with you and your beautiful Kai.
Nancy
We continue to pray for both you and Kai- there just aren’t words to say how sorry I am for both of you.
Holding you close Kerri. Sending so much love.
my heart and prayers with you and Kai always..
Thoughts and prayers are with you and sweet Kai. My husband, son and I say prayers for him every day… my heart breaks for you. Sending love and strength your way.
Vanessa
We are praying for you and with you. Praying for Kai’s comfort and your strength. Kai is so obviously at ease and comforted in your loving arms. You are an amazing mom. You are both surrounded by love and prayers from friends and strangers alike. Kai will fly with the angels when he is ready now he is happy snuggling with his beloved mommy and giving you some more time to drink in his warm body and soul. Thinking and praying for you both
Holding you both even closer today. Praying for Kai’s continued comfort and peace, and your grace. Hold on to him and just BE; he knows you are there and THAT makes him safe in this journey.
I think of you constantly! Keep enjoying ever moment you get with Kai.
Kerri, I am always amazed by the strength that a BT mom can continue to find with in the love of her child. I am praying for you and for Kai, your entire family and support team. I am praying for continued peace and strength. Your journey is one of great strength.
I am not a BT mom, and I don’t have children of my own but I have many beautiful children in my life that I love as if my own. Some of them are fighting this fight.
I wish no loved one, mother , father , sibling, anyone ever had to go through this life experiencing this awful disease. For those who don’t have that option, I wish for them the grace and comfort you have found in your beautiful Kai.
sending you another set of loving arms to hug you all.
Praying for your family ❤
Kerrie – you & your sweet boy are in my thoughts & prayers constantly. I pray for your strength and peace for Kai. With Love, Amy
Your writing is simply beautiful. The bond you and Kai have is truly amazing, he is such a special baby boy. I pray for you to have the strength to continue your love, support and guidance for Kai. I pray that Kai is in peace during this journey. You have both made me a better person and I will never take anything in life or my young daughter’s life’s for granted. Thank you for that.
Kerri,
Again, we all missed you at parent group yesterday. No one can take your place there. I’m happy that you decided to join our group of parents of children with blindness. I remember you saying after the Perkins spring conference that you realized that you had a blind baby and not just a sick baby. You have dedicated yourself to bringing the world within Kai’s touch, and bettering his life.
As I sit here and read this, tears opon tears are running down my face.. All I can do, is picture me being you.. Or that being my little boys.. Life is to short, and many times taken advantage of. It makes me realize what we have to be greatful for and how much we should appreciate what we are given. I am sooo heart broken that you and your sweet baby are going through this. It tears me apart to think any mom is going through this. You will always be in my prayers. I hope it happens, exactly how you imagine it. Even though it shouldn’t have to happen. At all! ❤
You are in our thoughts and prayers. Stay strong.
You are such an inspiration to everyone! You are such a strong Momma and has made me open my eyes and look at life and my babies in a different light! Your posts about Kai make feel like I’ve known this precious little man his whole life. Thank you for sharing every little detail…it’s been a true inspiration! Much love & prayer to your family and Kai!
May you, Kai and your family be comforted by the peace and love from your family, friends, and the kind words of strangers. Your strength is amazing and your story an inspiration. You are in our thoughts and prayers.
Dear baby Kai, I hope, you sleep peacefully, snuggled in your mommy’s arms, your head tucked under her chin so that she can continue to kiss you, smell you, feel your warm little body. I wish I had had the chance to know you in person, yet, somehow, through your mommy’s incredible words, you have touched my heart so deeply, it feels, as if I knew you. I think of you first thing in the morning and last thing in the evening, I wish there was something, anything to relieve your mum’s sadness. And even more so, to relieve the sadness that will come, if you have to leave. I still wish there was a miracle, but if this is not possible, I hope with all my heart that you will not feel any pain anymore. And that you will become your mum’s angel one day, to never be far from her. You are loved, even from very far away, from a total stranger. Sleep well, baby boy, hugs to you and your mum, Anja.
Thank you Keri for sharing Kai with us. You have such incredible strength and love for your sweet boy. Know that you have support, prayers and love surrounding you. My daughter has special needs and you made me realize what the truly important matters are. Its not what we don’t have or can’t do. Its all the small ones and tonight I will hug my kids extra tight and be blessed to have what we do today. Thank you for letting us be a part of this journey. Sending you extra prayers for peace and comfort. Michelle Grafton, MA
Thoughts & prayers every day & night ❤ I asked my friend to put Kai on her mothers prayer chain–prayers everywhere.
Kerri, we have our Christmas tree lights on 24/7 for Kai…with his ornament on the very top. We send our love and prayers every day
-Karen Griffin and family
Still here, refreshing probably ten times a day, all day, for updates. Thinking of you all. ❤
Love, light, hope, and prayers.
Kerri, I have read this at least 6 times today and each time I am in amazement of your strength. I don’t know if I would be able to be as strong as you. You are amazing. Kai is amazing. The fact that 3 weeks ago you choose to stop treatment and he still fights for every moment with you and mark is a testament to your love. I know we aren’t there in person but know that my heart and thoughts are with all of you daily. I am becoming a more thankful and compassionate mother because of you. None of this will ever be in vain. This love and strength touches more people than you can know.
You don’t know me, and I have never posted before…but I had to tell you how much I have been thinking of you AND Kai during this time. I continue to lift you all up in prayer and you have been weighing heavy on my heart. No mother should have to go through this…no child either! I will go to bed tonight praying again for you and your sweet baby Kai. I will pray that Kai has peace and comfort and that you will too.
Thinking of you all the time, Kerri. Praying for strength and comfort.
For some reason while reading this post all I could think is that in three weeks you’ve spent over 30,000 minutes with Kai, and how meaningful you’ve made each one of those by being there with him and being present for his every need and every aspect of his being. So many minutes are mindlessly wasted everyday, and the way you have chosen to live every day and every minute with intention is so powerful. Sending you long distance love and long distance hugs, and feeling grateful for the minutes I “spend” with you and Kai each day reading about him. xoxo
I have been following your story for quite some time now and I think you and Kai are so amazing! My cousin was diagnosed with an inoperable glioblastoma on his brain stem when he was 6. It felt so unfair, we were sad and angry but mainly all it added up to was fear. Fear for that day, the next, and the end. The thought of losing him was inconcievable! He passed away a month after his 7th birthday. He was so brave! I thought he was too young but to read about Kai breaks my heart all over again! He is so brave and young! He doesn’t deserve this, nobody does. Mg heart, prayers, and respect go to you and that precious baby!
Thinking of you, Mom.
Thinking of you and praying for you and your precious Kai you don’t know me but I am praying for you and your family. I was the mother of 8 very healthy children 4 boys and 4 girls (one set of identical twin girls and I thank God every day for the wonderful gifts He gave to me. I’m so sorry you have had to deal with such a sad commentary. Trust in the Lord, He will be your strength & Hope. God Bless You and keep you under his wing!!Terry P
I am leaving this comment after the much dreaded inevitable has happened. i unfortunatly heard about your little angel through his passing 😦 i am so sorry for your loss!! I am laying in bed balling my eyes out because i wish no parent ever had to go through what you have. its not fair. us parents are supposed to go first! 😦 in HS my BFF got diagnosed with cancer and had a long 4 year battle and is now in remission. i saw those families in your situation up at doernbechers when i stayed weeks on end with her and it is just the hardest thing to watch a child learn to walk using a chemo pole.. after reading this post i seriously wish i could just hug you! a complete stanger i know.. but my heart just aches so much for you. I really am touched by your angel Kai and I wish there was something i could do to help families that are in the fight now that you just ended… i am definatly going to involve myself somehow.. RIP kai ❤