It’s Not Supposed to Be This Way.

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

26 comments

  1. Mars · November 20, 2019

    Powerful!

    Like

  2. Michelle Eriksson · November 20, 2019

    What a great testimony to Jesus’ work in you. He loves you and your family so much and is with you through these challenging times. I think of you and continue to pray for you and for Oliver.

    Like

  3. ahafford · November 20, 2019

    You are my best friend on the entire planet Kara! God’s given you the gift of writing. I cry every single post. Preach, and keep pointing us to the gospel. Love you so much.

    Like

    • karalswanson · November 21, 2019

      Love you so much! I am forever thankful for your support and encouragement!! 🙂

      Like

  4. Joane M Jones · November 20, 2019

    With love and prayers continued.Thanking God for His grace and mercy.

    Like

  5. Terri · November 20, 2019

    Inspiring and powerful.
    You exceed your commitment to God everyday by putting one foot in front of the other. We are praying for you and your sweet family from Texas.
    Terri Gustafson Bahun

    Like

  6. Peggy A. Weber · November 20, 2019

    What exceptional writing..heartbreaking and God only knows what words want to relay to you; Oliver could not have better care than his parents and family; this is too hard to understand. You are in my daily thoughts and prayers.

    Like

  7. Shannon · November 20, 2019

    I ran across your blog on a friends facebook. Know that I am lifting you up in prayer tonight.

    Like

  8. Stephanie T · November 20, 2019

    From one NF1 mom to another. Thank you for sharing your vulnerability in your beautiful writing. Your strength is inspiring. Sending prayers your family’s way!

    Like

    • karalswanson · November 21, 2019

      Thank you for praying! NF1 has so many unknowns and it can be so easy to go down a spiral of “what-ifs”

      Like

  9. Mandie · November 20, 2019

    That scripture in Revelations has brought me so much peace as well. My youngest daughter has NF1 and optic gliomas as well as other NF concerns, but has not needed chemo yet. My husband was just starting his oncology fellowship when she was diagnosed and it hit us both so hard! He is now a BMT specialist. I lived in a state of fear for so long and still do at times, but finding hope in Jesus my Savior and her’s has brought light to the darkness. All your words rang so true to me. You and your family are in my prayers. Thank you for sharing your strength.

    Like

    • karalswanson · November 21, 2019

      Thank you for sharing your story Mandie! There are SO many unknowns and fears with NF1. It has brought me so much comfort remembering that Jesus is there with everything that happens medically with both my kids.

      Like

  10. Ronda · November 20, 2019

    You are the girl Kara. I feel all of what you are typing. We long for Heaven and those that are already there, but we also trust that Jesus holds the keys to Life and Death. He tarries for many reasons and I trust Him. I trust Him for you and Oliver. I trust Him for us too. THESE Swansons love YOU Swansons. I also get all the things that people say to you. I am only strong because of Jesus and that fact that I am living without the love of my life and not curled up in a ball attests to the power of God in me, not my strength. I didn’t sign up for pain and I don’t have a choice but to walk forward, but I DO choose Who I walk forward with. He is Mighty to help and sure to care. I stand with you Kara, and will until He comes. From here in Nebraska, receive my prayers and love for you and your precious ones.<3

    Like

    • karalswanson · November 21, 2019

      Yes! There is no choice but to walk forward in His strength…praying for you too from Washington!

      Like

  11. barnstormingblog · November 21, 2019

    Kara, you will be writing a book someday to help others who are walking this long dark lonely road and need to understand that the light and mercy of Jesus is what we long for and live for. Please know that many people who you have never met are praying for you as I’ve shared your family’s story with other physicians and care givers who know it takes super human strength to do what you and Seth and your families have done. Of course no one, not even you, is super human so your strength, even when it feels weak, comes from the body of Christ who also suffered so profoundly. Emily Gibson

    Like

  12. swanj800 · November 21, 2019

    Kara, your writing is beyond extraordinary. Your faith is being tested, and you are trusting God each step. Your faith and vulnerability is such an inspiration to everyone reading your story. We are trusting God for another miracle to heal Oliver. Your family is so loved and prayed over❤️🙏🏻❤️🙏🏻

    Like

  13. lglinsner · November 22, 2019

    I just finished Lysa’s book too! I’m so glad you found it. Been off facebook for a while, but happened to stumble upon your new post. I love the words you’ve found to share what is real and hard and true, and I’ll be praying for Oliver.

    Like

  14. Bekah Blankers · November 27, 2019

    Kara-
    Our family has been praying for you over the last year. Reading your writing tonight was such a blessing for me and my husband. We live here in Lynden and have a daughter with a very rare genetic disorder and often ponder where God is at in the midst of our suffering. Reading this tonight, reminded me that “it’s not the way it’s supposed to be” but one day will be and somehow He is with us in the brokenness. Thank you for sharing so deeply and candidly! Truly powerful and so many need to hear this!

    Like

  15. Pingback: The 11 Books I Read in 2019 | Swanson Family Blog

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