I didn’t really know what to title this entry but just “Kai” seemed appropriate because his name means more than just his name. We met with the oncologist today. The version of this disease he has is more than aggressive. It’s almost unfathomable how fast it’s spreading in just the past ten days. We were told of our option that could possibly slow it down to help us give Kai some better quality of life for a little while but it’s not certain how long, they say maybe a few months. We were told this disease will take our child’s life. I think I now know what they mean when they say you that you feel just numb. The decisions to make – how does one even do this?
Shawn and I haven’t made any decisions. Tomorrow morning, Kai will have surgery to place a shunt in his head to divert the fluid from his head to his little belly where it can be better absorbed and lessen the pressure. He currently has a drain in place but he can not leave the hospital with that drain and this shunt will allow him to go home.
I’m not sure what to think. But, while I was feeding our daughter tonight I felt that I was supposed to let you all know the news. And I am being pushed to tell you to not despair. I am being pushed to speak Life. I really do not know what the heck is going on here. I have no idea what is going to happen. But I’m being pushed to speak and say do NOT think of death. We must speak of life.
Do not be discouraged by this post. Please. Believe in life. Jesus is life. God we’re willing and we believe, will you please perform this miracle and heal our Kai for your glory? Yesterday I wrote about how Kai and I spent our day. Kai was just as in and out of it as he was today, but yesterday I was supported by God to speak life and so I spent the day with Kai and not the disease. Today was harder and the disease and the darkness crept over my eyes and anger and frustration rose up and made me want to act against the staff against our friends/family and against anything over any stupid thing because I was succumbing to the dark. I do not know what will happen to Kai. I am praying so hard and believing in a miracle that will show God’s power and work. But regardless of what happens, I do not want to remember any of the days I have with Kai as days with the disease. I want to remember them as days with Kai and his full of life spirit. Oh, I love this boy. I wasn’t one who always wanted to have kids. I was actually thinking I’d never have them. But my heart was changed by God and I was blessed to be given the privilege of being Kai and Maya’s mom. God, please guide us. God, please keep holding our Kai tight and loving him more perfectly that we could ever do. God, I still ask you if you will please heal Kai.
If you’re feeling lost and the darkness is there, I thought you might like these pictures of Kai that I feel give a good glimpse of the huge life that is inside this boy. God created Kai, God is light, and God is love and his light and life and love are in little Kai. Believe with me, hope with me, and together we will pray for Kai.
We will never be able to thank all of you out there, friends, family, those we don’t even know for all of the things you’ve been doing that we know about and don’t know about and I wish we could personally thank each of you, so please know from the bottom of our hearts the deep, deep gratitude we have.
20 Comments on Kai
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Aki that was a beautiful post. Thanks for letting us know and helping us be with you guys. We are all praying and thinking of you. Love you so much.
It is so hard to know what to say, but I just want you to know that God is with you…I know you already know that, but I just felt led to remind you that He is holding you right now in His everlasting arms. The more you hurt, the closer He pulls you to Him and His great, loving heart. Only HE could really understand this depth of pain, for He lost His only, begotten Son. He had to watch Him suffer and hurt and even had to hear HIM question “WHY? Why have You forsaken Me?” We are standing with you and still believing God for the miracle Kai needs. Jesus Christ is the same yesterday, today, and forever…including NOW, including THIS. His power is unaffected by the diseases named by man. Keep speaking life and faith and healing….into him, over him, and about him. Regarding not what you see, for this walk is by faith, not by sight. Many prayers are being prayed on your behalf. May you feel their weight…especially in those overwhelming moments.
What a beautiful testimony to life and God’s goodness we see through you and Shawn and your precious babies Kai and Maya. You may never know all the lives you are touching by sharing your deepest fears and hopes with us. Thank you for drawing us into your struggle. I know with confidence God is big enough to handle anything you throw at Him and I know He will grant you strength in return even though you may doubt it.
Aki, before you posted I was just thinking about what you described, that you weren’t sure you wanted to have kids. I remember having a conversation or two with you about that. But, I think God put you on this earth to be Kai and Maya’s mom, so that they could draw strength and comfort from you. I love the picture of Kai with the bandaid on his face– he is full of life. I love the picture you and Shawn painted of all day and all night reading to him. I am praying for his recovery.
I realize you all may not be Catholic, but I want you all to have this prayer anyway. It is a prayer to St. Jude, it asks him to pray to God for you and your need. I have used it many times when things are at their worst and I feel like there is little hope. I have used it to pray for Kai and thought you all might want it too. I love you both and I look forward to the day that Michael and Kai can play together again:
St. Jude, glorious Apostle, faithful servant and friend of Jesus, the name of the traitor has caused you to be forgotten by many, but the true Church invokes you universally as the Patron of things despaired of; pray for me, who am so miserable; pray for me that finally I may receive the consolations and succor of Heaven in all my necessities, tribulations, and sufferings, particularly (here make your request), and that I may bless God with the Elect throughout Eternity. Amen
You are both amazing, strong, wonderful parents, although I am sure it is more than difficult to have that role right now. Kai is so lucky to have you, as lucky as you are to have him. May God’s strength carry you through when you feel unable, and his peace and serenity protect you when you feel overwhelmed with despair and fear.
“I can do all thing through Him who gives me strength” Constantly in our thoughts and prayers…..
What amazing pics of Kai! What an incredible little boy he is. He just makes me smile when I look at these photos. Know that we are believing with you!
You, Kai, Shawn and Maya are amazing. Thank you for keeping is posted as Kai and your family are always in our thoughts. My heart goes out to you.
He’s adorable!! I am speaking life and believing that God will heal this sweet boy.
Continually praying for your sweet boy! For God to show His Power & then everybody will know it was Almighty God that did this miracle! I’m covering him in the blood of Jesus from the top of his head to the soles of his feet..AMEN!
Still praying for you all!
The photos of Kai are absolutely beautiful and do show how completely full of life he is. Thank you for sharing. Our thoughts continue to be with you guys.
My heart is breaking for you right now, and as I close my tear-filled eyes tonight, I will be blanketing your sweet boy in prayer, along with each of you. I’m so sorry. I will pray for LIFE, & I believe with all my heart that God is bigger than ATRT, & that he’s still in the business of performing miracles. I pray that you can get comfy in the palm of His hand, & that you will feel His presence. He’s promised to never leave is nor forsake us, although I’m sure you’re feeling like that’s currently not the case. It’s ok to be angry & scared, but He also asks us to be STILL and KNOW that I am God. Praying & hoping with you… LIFE!! I’m right alongside of you, pleading for LIFE for Kai. Hugs, love, prayers, & HOPE from Tennessee.
Standing in the gap, praying and believing in LIFE for Kai!
Kai has an amazing spirit and we celebrate his life. We treasure each precious moment that you share with us.
What a grin on his face! Praying hard for that beautiful smile and giggles not clouded by the disease that has overshadowed the last couple weeks. Praying for everything that Kai’s little body is enduring as he fights this, as well as you and Shawn as you face such difficult decisions. Much love across the miles.
Try to get some rest in the uncertainty of this Walk. Many many thoughts and prayers are with the entire family. Bless your hearts.
I am so saddened to hear of this. He is precious. My thoughts are with you guys. If there is anything we can do, please let us know !!!
Aki there is so much to be said about this post! Your strength and faith are admirable! You are so right. We will all get through this and we will let the light shine! Kai is filled with light and those who don’t even know him are seeing that right now! Continuing to believe and fight with you!!! Love you!