This has definitely been the most physically taxing parts of the journey that we've been traveling on. We get up super early and drive about an hour and a half to Tulsa. Coltrane gets pumped full of propofol (the doctors call it the "MIchael Jackson Drug". He falls asleep immediately and goes completely limp. He rests (although Coltrane is already building up a resistance to it) and receives his 15 minute radiation treatment. We have to wait for him to wake up to start the 20 minute countdown for us to be able to go home (standard anesthesia protocol). We drive home and get all of our other stuff done. We go to sleep and wake up at midnight every night to stop his G-Tube formula feeds. We go back to sleep and do it all over again. This has been going on for the last two weeks. We are exhausted. One more day of this. Tomorrow our sweet boy gets to ring the "Done with Radiation" bell at the hospital. The Smith family is so ready to be done with this part. Fortunately Jack gets to play at his Mimi's or Nana's most days.
If you see me (Justin) driving around crying or working while crying, or walking to my home from getting the mail while crying, please don't think I'm crazy. Well, I might be a little bit. I will most likely be crying tears of awe and wonder. Tears that cannot explain how much we appreciate everything that God and so many people are doing for us. They are tears of astonishment. In the beginning I was saying to God, "Why, God?! I don't understand.", in the hope of God revealing to me what His ultimate plan was, or to gain His favor in Coltrane's healing. It was very "Coltrane" based. This I find is good and normal for it to be this way. But if my tears could cry out themselves, they would say the same thing, but with different meaning. "Why, God?! I don't understand.", in the hope that God would tell me why he's being so good to us. Why is God blessing us in so many ways. Why are people giving to us the way they are? Why is God showing His complete love to us? Why is God leading us so well during this hard time? I don't think I've ever been so clear minded with my life than now. God changed the "all about Coltrane" to the "all about God". It really is about Him. It's not about how I'm feeling, how my family is doing, or even how Coltrane is. It's all about God. He's the one we can rely on. He's the one we need to focus on. He's the one that deserves our best. He deserves our worship. He is the being that has this grandiose plan that is so masterful, I cannot comprehend it's depth. Lives are being touched through my son's story. God is working in those who are caring for us. God is whispering to the people who are watching us. Everything points to God. And I am beside myself most days, in awe of how He loves us. God really is good and He really cares for us. We are so grateful to get to know Him so well during this time. God is already turning things from evil and sorrow to good. Pure goodness. Like the perfect cookie. The perfect caramelized brownie. The five tiered, perfectly layered chocolate cake. The perfect filling. God is truly the filling. He fills that void in our lives with exactly what we need and what is best, for His plans are perfect.
We are at the end of radiation therapy, thank God. Coltrane has gotten sick a few times and his numbers are low, but other than that, he really is doing great. We have some scans coming up next week. They will hopefully show great results to the doctors.
Please pray for:
Coltrane to have No Evidence of Disease (NED)
The Smith family to have more faith and trust in God and His plans for us
Our bodies to be rejuvenated
Wisdom in decisions we have to make
The doctors to have God's wisdom
For the upcoming Immunotherapy in OKC to go extremely well and that Coltrane will not have negative side effects.
Thank you all so much, we love you.
Justin,
Sonja,
Jackson,
and Coltrane the Old Soul
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