We are getting so close to being a year post-transplant for Oliver. Once the year was up, his cancer was never supposed to come back. We were going to be free to go back in public with him again. We could move on from cancer and try to never think about it again…but then we got test results showing that Oliver’s transplant was unexpectedly failing. He doesn’t have cancer right now, but he is at high risk for relapse. Relapse would mean a second transplant and just typing that out makes me want to throw up. A second transplant would mean that the year we just had was the easy year. It would mean living apart again. It would mean months of isolation and loneliness in the hospital. It would mean a significantly lower chance of survival and a significantly more damaged body on the other side.
I picked up Lysa Terkeurst’s book It’s Not Supposed to Be This Way yesterday and I finished reading it in 2 days. While I wouldn’t say it was the best book I have ever read, there were several parts that seemed like they were talking straight to me. We live in a broken world between two gardens and our souls long for and expect things to be right and perfect now.
I want people to know that I’m not any different than anyone else. I don’t have some crazy extra dose of endurance or optimism or special ability to be ok with my child having cancer. People sometimes say “you are so strong” or “I don’t know how you do it.” You just do it. You go to the next appointment and you wait for the next test results and pray. We were just a really normal family and were 100% blindsided with cancer.
“If we keep walking around, thinking that God won’t give us more than we can handle, we set ourselves up to be suspicious of God. We know we are facing things that are too much for us. We are bombarded with burdens. We are weighted down with wondering. And we are all trying to make sense of things that don’t make sense. Before we can move forward in a healthy way, we must first acknowledge the truth about our insufficiency. Cancer is more than I can handle…on my own.” (p112)Lysa Terkeurst, It’s Not Supposed to Be This Way
I do believe Jesus can perform a miracle for Oliver…I believe he already has! Oliver’s pediatrician catching his cancer before he was symptomatic, getting a 10/10 match for his transplant, Seth having Mondays off to be able to take Eliza to her chemo every week for a year, Oliver’s body doing SO well through transplant that one doctor said he is in the top 10% of kids that ever go through transplant, Oliver getting his feeding tube out way earlier than expected, living so close to one of the top transplant hospitals in the country, etc. All of these were miracles and mercies from God.
I pray with every fiber of my being that Oliver gets back to 100% donor cells and is cured and becomes a walking, talking miracle that proclaims the gospel for his entire long life.
I also know that prayers aren’t always answered as yes. Our family has had a front row seat the past two years to families that have had their prayers answered as no and it is gut-wrenching and heart breaking. It isn’t a matter of that they didn’t pray hard enough or didn’t trust enough…this world is just plain broken and NOT the way it is supposed to be. Almost daily we have thrown in our faces that this world is NOT our home. This world is full of sickness, sin, and brokenness. We are longing for someday when “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away” Revelation 21:4. What a glorious day that will be!
Some days I grieve deeply over what I was hoping for my life. I love being a wife and mom. LOVE it. When I had kids I knew it would be hard and exhausting and fun and rewarding. What I did not expect was to cry as I folded size 3T laundry and wonder if my son will get to wear the next size up. I did not expect to wake up at night with nightmares of a medical procedure gone wrong. I did not expect to spend months away from one child while I took care of another one. I did not expect to tell my daughter that even though her chemo was over, her “dark eye” would never be light again.
I’m human – I get jealous of people’s lives that look easy, whose kids don’t have cancer and the things they worry about seem inconsequential. On the other hand, I know there are so many families who would love to be in our position, to have treatment options, to have both our kids alive and home. It is so unhelpful to play the comparison game. There is always someone who has it easier and there is always someone who has it worse. Suffering is suffering and hard is hard.
We have SO many things to be thankful for today. Right now, our family is together. Right now, Oliver is feeling the best he has felt in over a year. Right now, we have an amazing and encouraging network of support of friends and family around us. We have doctors that have a plan for Oliver. We have frozen cells that they can try to use. We have seen so many of God’s mercies and glimpses of him over the past year.
Lysa also wrote:
“You live in a broken world where broken things happen. In a sin-soaked world horrible things happen. They just do. And you will hurt deeply because of these things. You, dear girl, will also watch others hurt. You will hear human answers that try to tie bows around the big blows of life. These sound good in a sermon but never hold up in real life. And that’s when you will see what a gift it is that you’ve been entrusted with enough hurt to keep you humane. You’ll offer the only real answer available: ‘The Lord helped me survive and He’ll help you too. I’ll hold your hand while you find your way to him.’Lysa Terkerst, It’s Not Supposed to Be This Way
I don’t know what is going to happen. (Honestly none of us do, but it just seems a whole lot more flung in your face when you are waiting for a specific lab result or test). I probably will never know on this side of Heaven why our family, why Oliver, why suffering. It has brought me comfort to remind myself that God has all of Oliver’s days planned out. He knows and will be with us all every step of the way.
We also appreciate every. single. person. that has prayed for Oliver and our family and that continues to do so. A few people have said to me “I wish I could do more than pray” or “I know it is just words, but I am praying for you.” IT IS NOT JUST WORDS. Please keep praying. I know the fact that I am still able to peacefully sleep through almost every night is because of people praying for me. I know the fact that Seth and I still have a strong marriage on the other side of this year is because of people praying. We can never ever thank you enough for praying and for letting us know that you are praying.
“Though we can’t predict or control or demand the outcome of our circumstances, we can know with great certainty we will be okay. Better than okay. Better than normal. We will be victorious because Jesus is victorious (1 Corinthians 15:57). And victorious people were never meant to settle for normal.”Lysa Terkeurst, It’s Not Supposed to Be This Way