Living an overcoming life against overwhelming odds.
by Kerri Ellen Hanke as told to Priscilla Tate Gilmore
Things were not going as expected. A routine trip for an ultrasound of my fourth child, Annie, led to another ultrasound and an amniocentesis. With each test, the possibility of a heart defect hovered like a dark cloud.
Little did I know that the results of these procedures would change my life forever.
Heart defect
During my first-ever amniocentesis, one of the nurses commented, “Good luck.”
Was she insinuating that abortion would be an option for this child? I wondered. I believed God purposed my daughter to be part of our family.
Then my husband, Mark, and I were sent to the cardiologist’s office, where he confirmed a heart defect. “It is common in children with Down syndrome,” he told us.
Shock and fears
We walked out of his office and down hospital halls in silence. The shock that our daughter might have Down syndrome outweighed images of Annie’s heart problem.
Overwhelmed and gripped by fears of the unknown, tears flowed. I will never have a mother/daughter adult relationship, I told myself. And I won’t be able to pick out Annie’s wedding dress. A child with Down syndrome seldom gets married.
Those challenges would happen later in life, so my fears turned to the immediate future. How will my husband and I afford the medical bills? Will I have time to care for her and her three brothers — two, four, and five years old? Will I have a normal life? Will she go to school and graduate? Will she have friends?
The list of fears — endless.
Scriptures
“Jesus,” I cried, “where are You? Do You see me?”
God answered when I personalized Philippians 4:13 and Jeremiah 29:11. These scriptures told me I could do all things related to our daughter because Christ would strengthen me. He knew the plans He had for Annie, and they were for good, full of hope.
I sensed God’s peace.
Assurance
It didn’t last too long, however. Lying on my bed, failing to understand completely, I cried out, “God, I can’t do this!”
Through His sweet Holy Spirit, God answered, “You’re right, you can’t. But . . . I can.” These words assured me that God would walk with me, guiding and directing every step through Annie’s ordeal.
High risks
Yet I still had to deal with a human aspect: the high risks of Annie’s heart surgery, scheduled when she was five-and-a-half months old.
On top of these, the surgeon flew out of town to harvest a heart for another patient, then traveled back to Children’s Hospital in Colorado, where we were. He had been awake for only twenty-four hours and now was scheduled to operate on my daughter.
Thankfully, the surgery, scheduled for 9 a.m., was delayed an hour. The time allowed me to nurse Annie; the moments holding her, special.
Tough surgery
Annie survived the six-hour operation, but she experienced what equaled two major heart attacks. Had it not been for the extracorporeal membrane oxygenation machine (ECMO), which takes over the function of the heart when the organ demands rest and healing, Annie would have died on the operating table.
Following the procedure, the surgeon attempted to close her chest twice, but Annie couldn’t bear it. They left her chest open.
The cardiologist gave us grim news: “If the surgeon attempts to close again and Annie can’t tolerate the closure, he and the team will let her die.”
Hard emotions
Seeing Annie for the first time after surgery, I was so overwhelmed, I couldn’t stay by her bed very long. My daughter, unrecognizable. Puffed up. Red with thick “fake skin” covering the open chest with pieces of bars to hold it open. I found it hard to breathe. The room — cold. Unfamiliar noises. Smells.
More prayers.
Encouragement
Then, an answer.
After two failed attempts, Annie tolerated the closures of her chest cavity. The next hurdle was being weaned off ECMO. I prayed that God would let my daughter live beyond this day — Mark’s and my anniversary. I didn’t want the pain of losing Annie to be a part of future anniversaries.
Terror and release
Annie’s surgeon called at 3:30 a.m. and told us to come to the hospital.
When we got there, Annie’s fingertips and toes were black. Her body, bloated. Heart, failing. We didn’t want to plan Annie’s funeral.
Mark and I ached to be alone with her, not wishing to share this moment with anyone else. I didn’t want to face the reality that she was dying. I still hoped Annie would be mine.
Terrified what life would be without her, I managed to pray, “God, take her. We can’t do this anymore.” Then, holding Annie’s black fingers I whispered, “Honey, it’s okay to go.”
Parting clouds
The surgical team wanted to put a tube in for dialysis to keep the kidneys alive — one more hole/tube in her body.
After the dialysis tube was inserted, Annie started to urinate. I was relieved that I didn’t have to walk down the path of her death, that the clouds of this journey were parting. Rays of sunshine and joy warmed my soul.
Coming home
Annie spent two months in ICU and two days in a regular hospital room. Now a happy day: time to go home.
The evening we brought her home, I nursed Annie, even though she was weak from her heart surgery.
Amazing progress
We had been told that Annie might be a vegetable and never walk because of the trauma caused to her heart. About eight months later, when she should have been walking, I arranged for a physical therapist to come because Annie crawled like a bear with her forearms on the floor and her bottom in the air.
But the night before the therapist arrived, Annie walked! I laughed out loud at God’s sense of humor.
Down syndrome now looked like a piece of cake. I understood Annie’s pattern of development: won’t do, won’t do, then does. “Lord,” I prayed, “bring on the challenges of Down syndrome.”
Transformation
Since Annie’s first steps twenty-nine years ago, God has turned my fears into non-essentials. What began as difficulties or challenges has turned into joys or new perspectives and lesser expectations.
I have come to understand that what’s inside Annie is trapped because of her limited ability to communicate. When she meets people, she sometimes focuses on the ground. Face-to-face conversations are intimidating. But there is so much more to her than what people can see.
Purpose
Nevertheless, Annie never ceases to amaze her mother.
Last year, my husband and I were invited to a dinner/fundraiser for someone in our church. Annie insisted on going. At the event, I noticed Mark talking with a woman. From the body language, the conversation appeared to be intense.
Annie walked over and grabbed hold of her daddy’s hand. I followed, hoping to reclaim my daughter, and overheard Mark trying to present the gospel to the woman in front of him. She verbalized her failures and resistance to the truth. While they talked, the woman allowed Annie to embrace her. Then my husband led the woman to the Lord.
Annie, moved by the Spirit, had been placed there for a purpose. The story still brings tears to my eyes.
Work
Today, Annie works at our church school, Capital Christian School and Sonshine Daycare. She shreds papers, refills water cups, and wipes tables after the kids’ lunch hour. When a teacher disciplines a child, Annie repeats their name. Then the teacher will often say, “Do you need to sit by Miss Annie?”
The kid might often respond negatively because Annie can be, well, kinda bossy.
Full life
In spite of her determined attitude, Annie has a quiet, peaceful nature. She has a supernatural ability to never forget the hurting and sick in her nightly prayers.
Although she won’t marry and have a wedding dress, Annie had a date for every prom, wearing beautiful dresses, and she graduated from high school. She attended two Night to Shine events, sponsored by the Tim Tebow Foundation, for adults with disabilities.
Walking Companion
God has continued to walk with me every step of Annie’s life, proving Himself faithful. Whenever I start to think, I can’t, I remember He can. God had a way of making up for what I thought I wanted in life. I’m a better person and so are her bothers because of Annie. I wouldn’t have it any other way.
Priscilla Tate Gilmore (a pen name) is a published author of fiction and non-fiction stories, articles, and devotions for kids, teens, and adults. Her writing has appeared in The Christian Journal, Insight, Purpose, LIVE, Power for Living, Keys for Kids, and The Quiet Hour. Priscilla lives in Salem, OR, and has two adult children.