Life-Changing Grace

Since 1985, every year on October 9, I remember a terrible-wonderful time of healing and abundant grace upon grace. The first time I told the story was in the December 1986 issue of Family Computing magazine. On October 9, 2010, “Life-changing Grace,” a LivingLutheran blog post remembered the 25th anniversary with gratitude. Below is a slightly edited version of that post. —Sue

It’s been 30 years. Thirty years since the time of amazing, undeserved and life-changing grace upon grace.

Paul, Sue & Annie Edison-Swift, November 1985.

The Edison-Swifts in 1985

On September 24, 1985, I took almost 5-year-old daughter Annie to the pediatrician to be checked for a possible ear infection. He discovered an abdominal mass.

After 36 surreal hours, we had a diagnosis: Stage 4 Neuroblastoma, a deadly childhood cancer. We had a prognosis: My husband, Paul, and I were told it was highly unlikely that Annie would live to see her sixth birthday.

Normal ceased, replaced by test upon test, procedure after procedure. I imagined handing out a list of things not to say after Annie’s death. The don’t-say list included, “God needed another angel in heaven,” and “It’s for the best.”

At this point in the story, even after 25 years of practice, I stumble. The details, etched in my memory, heart and face make the story too long. So, I will summarize: For 10 days there was no hope.

Then, there was a chance.

Annie's incision left a hip-to-hip, upside-down smiley face, badge of courage.

Annie’s incision was an upside-down smiley face badge of courage.

On October 9, 1985, a cantaloupe-sized tumor was surgically removed from Annie’s abdomen. Two days later the lab report confirmed the impossible good news: the tumor was Ganglioneuroma, the benign, “mature” form of Neuroblastoma. Annie did not have, or no longer had, cancer.

I worry about offering the condensed version, though. It’s easy, hurtful and wrong to confuse cure with faithfulness. When the bottom line is “cured,” the point — undeserved grace — can be missed.

Grace: Paul and I were emptied, but not empty. There was nothing we could do to change Annie’s diagnosis or prognosis. Instead of feeling alienated from God, which we had every right to be, when we were emptied of our own usual notions of control and autonomy, we found the grace-space was filled with God’s presence.

Grace: We were given the gift to recognize our assets and could skip the “Why, me?” “Why, Annie?” questions, which we had every right to ask. We lived five minutes from a world-class hospital. Paul worked across the sidewalk from Annie’s hospital room. One or both of us could always be with her. We had excellent health insurance benefits. We had amazing community surrounding us: congregation, friends, family and dear neighbors.

In a time before e-mail, when a typewriter, not a computer, was in most homes, Paul had programmed our address book in our computer. This made it possible to send a series of five letters to about 100 people, who passed the letters on to others and created an amazing support network.

Grace: Sighs and prayers. Most times Paul and I were using the “sighs too deep for words” prayer approach, so we were especially grateful for those people who could voice in prayer what we could not. “I will pray for Annie’s cure every time I nurse the baby,” one acquaintance wrote. “I pray that our faith will be stronger than our fear,” wrote a member of our congregation who was battling cancer.

Grace:
Vocation. In a November 1985 letter to family and friends, I wrote: “This experience will surely shape our lives, influence our choices, give us direction. … We will learn from Annie how to put some of this experience behind us and some of it ahead of us. Instead of counting blessings, we will try to use them. And, we will always remember how the love of God, our love for each other and the love from all of you saved us.”

In November 1987, Paul accepted the invitation to join the newly formed ELCA churchwide staff and help launch the communication department, believing that God was offering him the chance to “give back.” This led me to begin my 23 years of service at the churchwide office in February 1988.

Home alone one afternoon, 9-year-old Annie read through the scrapbook of letters, documents and details of this time. That afternoon, when she realized how serious her illness had been, she understood that God had a claim on her life. “God must want me alive for a reason,” she told us. Annie was ordained as an ELCA pastor on September 18, 2010.

The Edison-Swifts and Edison-Albrights in 2014.

November 2014: Edison-Swift and Edison-Albright family.

Grace: The gift of gratitude. Each year around October 9, I remember the time of amazing, undeserved and life-changing grace upon grace, and I am reminded to be grateful.

Thanks be to God.

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10 Responses to Life-Changing Grace

  1. Julie says:

    Thank you for sharing. We too had a similar experience with our 6 year old daughter in 2006. It was a ganglioneuroma in the abdomen and I will forever be thankful that she is here and is now 15. I can relate to your story and the grace upon grace each day. You put it into words so well.

    Julie

  2. Lynn M. says:

    Oh my goodness, what a frightening time in your life! Cantaloupe sized tumor!! So very, very grateful that Annie grew up to be wife, Pastor Annie, mama, etc. etc.

    Our Gabriel is coming up to five months post-op from his most recent heart surgery. May was a very scary month for me personally, but I was also overwhelmed by the grace of God. Well, I am always overwhelmed by God’s grace but particularly then. And our Nolan, what a gift from God! As are Scott and Andrew, our “typical” grandsons, as well. God is Good, all the time.

  3. Susan Preece says:

    What an awesome story! Just goes to show that you never know the trials of someone on the surface. I’m a former colleague of Paul’s and have truly loved watching your pride continue to blossom as Annie grew up, went off to school and settled into her career and marriage and parenting. What a blessing your family is!

    And your story is especially meaningful as I watch a dear friend struggle with cancer treatment. Her main request is that God be glorified in her journey. I want so much to honor her request as I feel so helpless in her struggle. Your story reminds me that in the good and the bad, we can still praise God. And that as long as we have breath, we can tell the Good News and share His story through our own stories. I give thanks for you!

  4. Jane Bergo says:

    Truly a testimony to grace. Such a joy to know both of you. Sharing your story has lifted my spirit. Still on facebook. Thanks for a good break in my day.

  5. Laura Lee Wright says:

    I had no idea….thanks for sharing God’s grace with us.

  6. Nancy Pallansch says:

    Sue… Been thinking about you, Paul, and Annie and found this! Let me hear from you and we can share what has happened to us in the last 35 years! Look for me on Facebook.
    Nancy Pallansch from Wisconsin days

  7. Linda Janssen Gjere says:

    Thank you for sharing an amazing story with your iceberg phrases that are awe-inspiring on the surface and take one down to the depths of understanding then back up to the surface where one floats in God’s Great Grace. Life-changing Grace absolutely.

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