It’s been a week since Kai had his brain surgery. When I write these words I am still in disbelief…. what is happening? He had what? last Saturday? He’s been diagnosed with cancer?!?!? Our world is upside down. We’re moving and doing and the time is passing but part of me is stuck. I wake up sometimes laying next to Kai as he’s in and out of rest during the night and I forget what’s happened. And I see his swollen face and I feel awful when I break out in tears. I don’t want him to feel this pain. Right now the Kai I know is hard to see – I didn’t realize how strong an effect the steroids can have on his personality until we started asking around. I admit I’m scared that even when he is fully weaned off the steroid, what will he be like? But the truth is, Kai’s spirit is in there still, he’ll be cranky moaning and then offer some of his food to someone or he’ll have his face buried crying and then say he wants to see his friends. But it’s hard. And I dont, dont want to see the disease when I look at him. I want to see the huge, joyful life and spirit that is Kai.

This is where I’m struggling on what to do next. We’re now hearing of survivors. They are very few but they are there. I have so many questions. Was it worth it? What are they like now? I feel like he’s being tortured now, do I put him through more? For what purpose? I have not done much research – Shawn is heading this up with much help from so many friends and especially a friend who is just amazing at assimilating and digesting so much complex info. We are SO thankful for all of you who have reached out with connections and helping us learn more and more and more. You guys are so selfless and generous and kind, oh my goodness I don’t even know how to begin to say thank you.

But as we are struggling through processing, researching, considering options and trying to be patient with the craziness, crankiness, restlessness, and uncomfortable-ness (is that a word?) that the steroids are causing Kai, I also do see him getting stronger. He doesn’t want to stand up and walk, but when he does he does it better. He doesn’t want to practice going from sitting to standing, but today he does it better than yesterday. And today he climbed the stairs up to his room with Shawn. These are big steps.

And yesterday, he wanted to sit outside in his little camping chair and his friend Nicco came by and rode his bike. Kai was sitting in his chair saying he wanted to go in. Then he saw Nicco – immediately he said I want to ride my bike too. Yes, Kai. Yes. You are going to ride your bike. I picked him up and put him in his bike and he pedaled, he wanted to follow Nicco. Then he saw Piper’s house, and he wanted Piper to ride bikes too. Piper and Nicco, one day hopefully you’ll know what an amazing thing you did for Kai yesterday – you inspired him to move, you pulled his spirit out from under the drugs and disease. And I know in this picture, the stink face is front and center, but that’s just the outside. But if you’re looking for Kai, his life and spirit, it’s there front and center, playing outside with his friends.

Kai and Piper and Nicco on bikes 03.14.14

Thank again so much for helping us navigate this new world and new vocabulary and new life we’re fumbling and stumbling into. Thank you for continuing to pray. I lost it in a big, awful way last night and thinking of all of you out there not giving up hope and praying helped bring me back. Thank you.


13 Comments on I want to ride bikes

  1. Such a great post and pic. Way to go, Kai! We’ll be riding bikes and so much more very soon. I just know it. Hang in there Aki and Shawn – know you are loved and NOT alone in this fight. By any means…

  2. Bless your dear heart. Only Jesus can really comprehend and understand the pain in your sweet, mother-heart. Only He can reach those places of brokenness and heal and mend and make whole. We, as humanity, are so helpless at a time like this. But, HE is all-power. May you feel His loving, everlasting arms holding you close to His heart during these difficult days. Many prayers are going up for you! You are so strong and brave…much more than you realize. Your courageous spirit shines through every word you write.

  3. Aki, you have always been good at seeing both the big picture and the details and figuring out the best way to go. I know that you and your family will chart your path through this incredibly difficult time and glad that you have friends helping you. Please know that it is really a gift to us to be able to help you, even in a small way. You are doing great, hang in there, we are here for you.

  4. I loved seeing this picture of Kai on his bike! So thankful for the wonderful parents that you are, Aki and Shawn and thankful for Kai’s little friends and the energy and encouragement they gave him! Praying for your research efforts as well!

  5. I love this picture and his face. Aki and Shawn, just know that we are getting involved at the school. You may have left, but the Slockers family will always be apart of the Goddard family. It is a gift to be able help you all. We love Kai so much! You are in my thoughts and prayers all day.

  6. The other day, I was having a moment with God. It wasn’t a very pretty scene, I will admit. But…in the middle of all my confusion and angry, I had the best vision. It was of Kai and I on the playground at school. We had found a quiet corner, he was sitting on my lap. We were blowing bubbles, talking and laughing. Kai wasn’t yet able to keep up with the other kids but he was a quieter version of my little friend. I’m keeping this vision near so that the day it happens, I will praise God for all His promises that only He can make.

  7. I love how you all just keep speaking to Kai’s spirit. That is where the healing comes from. Love to you all.

  8. What a great step, in so many ways. We love to hear and see this. Thank you so much for letting us be a part of your journey. We are here for whatever you need and are in awe of you. All our love.

  9. Lots of love and positive energy for you guys! God will see you through this journey. He never leaves us and is always there to comfort us in our time of need. I know he will guide you through all this. All our love and I’m praying for your family and Kai each night!

  10. its good to see Kai up and about. i am praying for his and your strength and healing every day.
    Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge. (Psalm 62:5-8 NIV)

  11. Aki, you may be fumbling and stumbling, as well you should, but you are doing it with grace. Thank you for your updates.

  12. There are so many people (whom you do not know) who are praying faithfully for your family, Aki. Our family members living across the country and our church family in Texas join us in lifting you up to the Throne of Grace–moment by moment. We are trusting God to meet your every need, no matter how small it might seem to you. If it is of concern to YOU then it is important to GOD! May God help you with the decisions you need to make, and may He give you His Presence and His Peace to comfort you.

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