Yesterday morning, the oncologist came to visit us at home. She wanted to check on Ben and see how he was managing with his back pain, etc.
Like us, she was impressed with his ability to talk, think, respond and remember. It appears as though the tumor is not moving out as much as we might have expected, expanding his brain and pushing valuable pieces that control function. What a miracle that the headaches have been almost non-existent! Instead, it appears that the cancer is moving down. Into his spine. She believed that was the larger reason of why Ben's back is causing him so much pain. We can still lessen his dosage of the steroid, but at this point, that appears to be an issue of lesser importance.
The cancer is spreading.
Whereas we had been hoping that his lack of headaches meant a shrinkage of the tumor, it seems as though that's just not the case.
I cried a lot last night. Wept. Sobbed until my eyes were swollen. I still have a headache today because of my display of grief. It's not that this kind of information should have come as a surprise, I suppose. It's one of the only things we really know about cancer, I guess: it is in its very nature to spread.
I am grateful that he is still maintaining more brain function than we expected. That alone really is a blessing. For Ben as well as our family. But I am devastated at the thought of the cancer spreading into other areas of his body. I remember my mother-in-law's relatively swift decline as the cancer spread to her organs. And we painstakingly watched them shut-down, one by one.
My baby. My sweet, sweet baby.
I cried out in anger to God... for like the hundredth time since we started this journey. So frustrated. Angry. And incredibly sad. I used one of Megan's shirts as a tissue and nearly soaked the whole thing. "Please don't make us walk any farther!" I begged. "I don't think I can do this! I am just not strong enough! How can you allow this to happen? If You healed him, think of all the people that would believe!" I sobbed as quietly as I could so I wouldn't wake the rest of the house. It is so difficult watching your almost-five-year-old go through this kind of discomfort. Pain that you can only manage with medication. And when your primary goal is simply to make him comfortable. It's heartbreaking.
My thoughts turned to heaven. The hope we have in not only Ben's future, but ours as well. I had started to read Todd Burpo's book, Heaven is for Real a few weeks ago, but abandoned it when my husband requested that we read it together. I wish we could have experienced it at the same time. But even though we are both home every day, our paths rarely cross long enough for us to do something like that together. We basically tag-team through our entire day. Ben requires one of us exclusively, which recently has been all Andy. I do what I can to be there for Jack and Megan. Andy's help is better for Ben now anyway, who is much more capable of lifting Ben from place to place rather than his pregnant wife (who just started experiencing that lovely side-effect of pregnancy called sciatic pain.)
Last night, I decided that I should finish reading the book. I really needed a healthy dose of real live hope. It was either that or cry the entire night. And I had already done quite a bit of that.
I'm really glad I did. I still cried through the whole book, identifying with the pain behind the father's touching words. But it was a good cry. A healing cry. A cry of hope.
This little boy went to heaven and came back, just two months shy of his fourth birthday. He was only gone for three minutes of earthly time, but spent what must have felt like an eternity, seeing and describing things that there would have been no way of him knowing otherwise. Things foretold in the Bible and yet not completely accessible to a child so young. One of the things that encouraged me most was how he talked about Jesus. "He really really loves kids, Dad!" he kept telling him. As if that was the most significant part of his journey that he wanted to convey.
It was certainly the most comforting thing for this mommy to have read.
Todd, a pastor, talked about how he had taken his six-year-old son (two years after his visit to heaven) to visit a dying man in a nursing home. Unannounced, Colton took the hand of the man as he drifted in and out of consciousness and said, "It's going to be okay. The first person you'll see when you get there is Jesus."
I bawled. Like a baby.
I found myself saying, "Yes! I want that! I want to see Jesus! I want Ben to be with Jesus!" Just picturing the serenity and the peace of our Heavenly Father's eyes, His throne, His heavenly kingdom calms me as much as sitting at the beach on a beautiful summer evening. And yet I surprised myself, thinking those thoughts just minutes after my words of pleading with God to spare his life.
No matter what happens here on earth, heaven is the hope we have in Christ. Our guarantee that life extends beyond this one. And there, no one is sick or old. I am so grateful that my son will be with Jesus. Perhaps sooner than I would like, but he will be with Jesus. Our God who completely adores children. He loved them so much that He was constantly trying to encourage us to be like them! Their uninhabited curiosity, honesty and faith.
Colton met his great-grandfather, "Pop," who died when his dad was six years old. His father was surprised to learn that his Pop wasn't sixty-one years old in heaven, the age he was when he passed away. He was in his twenties. His best self. No glasses. No wrinkles. His very best self. And he knew that Colton was his great-grandson. Just amazing.
I thought of Ben. I'd imagine that Benjamin will see heaven as the healthy four-year-old little boy that we knew earlier in January. That trim, healthy and vibrant little boy I will always know him as. He will be able to run again. With no back pain. No headaches. Play with the animals. See his loved ones that have gone before him. John the Baptist. Daniel, Moses and Jonah. Perhaps David would let him play with his slingshot. But most amazingly, he will meet Jesus, face-to-face.
Painting called "Prince of Peace" by Akiane Kramarik, age 8. She also visited heaven as a child and then recreated this image of Jesus. Years after Colton's visit to heaven, he verified that this was the closest rendition of Jesus that he had seen on earth. Their stories matched. Heaven truly is for real.
I still cannot tell you how much I just want to jump ship right now. Throw the towel in and admit, "Okay, we've had enough. We'd like to get off this rollercoaster now!"
As much as I'd like to see Ben grow into adulthood and share with others the miracle God played in his life, I want him to see heaven. I want him to be with Jesus. I want him to be himself again, but better.
Having God living inside of and all around you makes you think differently. God changes everything. Absolutely everything.
Quite honestly, I can't say that I won't continue to plead with God to change His mind. To spare Ben's life and continue his life of ministry here on earth for many many more years. I am still human, and a mom who selfishly wants her healthy four-year-old back. But I am so much closer to coming to terms with God's sovereignty than I was before. God is God. He is good. He knows the bigger picture. And He loves us - and Ben - so much more than we can imagine.
Having God changes everything. Absolutely everything. Including me.