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.