In late 1998, my husband Rick and I learned that we were expecting our fourth child. Tamalyn, Stuart and Donal were only five, four and two years old, respectively. Our pastor at Riverside Wesleyan Church, Steve Forsyth, assured us that God had a plan and would give us a special joy and love for this child. Later, God gave me this promise: “And whoever welcomes a child like this in my name, welcomes me” (Matthew 18:5 New English Translation).

When I was five months pregnant, we learned that our baby had Trisomy 18, similar to Down Syndrome, but more grave. We were to expect severe mental retardation, and a ninety percent chance of heart and other physical defects. Half of all T18 babies die within the first month, ninety percent in the first five months. This news was devastating even though we believed that God would be with us.

Kenna was born on June 25, 1999 at three pounds two ounces and not breathing after delivery. Still and gray, she did not respond to oxygen. Her heart rate was minimal. Our doctor sadly advised us to “let her go,” and medical staff left us to say our good-byes. We held Kenna and cried, talking to and stroking her. Amazingly, an hour later, Kenna shocked us by crying for the first time! Her heart rate had gone from forty to one hundred! The staff had never seen anything like this before; they called her a “miracle baby.” We felt we had received her back from the dead!

Kenna stayed in the neonatal ICU for two weeks and was home for two months. At four days old, doctors found a large hole in her heart. We almost lost her at birth, then witnessed a miracle, only to fear that she could die any time. But days passed and Kenna lived, gaining weight despite being so weak that she could only feed through a nasogastric tube.

Tamalyn loved caring for and singing to her sister. Stuart prayed for God to “please make Kenna bigger and stronger and to take her trisomy away.” Donal would toddle over to gently pat Kenna’s head and kiss her. Fragile but calm, Kenna made a deep impact on people. She touched our souls. She reminded me of a little old wise woman, if only she could speak.

At her last checkup, she weighed four pounds thirteen ounces and seemed to be doing well on heart medication. Maybe she would be with us for a while. We prayed for Kenna’s heart to be healed. One night I couldn’t sleep. I had an urge to hold Kenna and found her awake, breathing noisily. I laid on the bed with her resting peacefully on my chest and wrote in my journal until I was tired. I said goodnight to her at 1:30 a.m. God gave us that last special time together.

Kenna left us early on Labor Day morning. Relatives, friends and our church families all gave us tremendous support. Although heartbroken, I felt strong enough to share about Kenna’s life at her service of witness to the resurrection. What I did not expect was the overwhelming sadness, heaviness, and confusion that followed. I could not understand God’s purpose for Kenna’s entrance into our lives and her departure. I dragged through the months, kept going only by the need to care for our other children.

Every Sunday I wept at church, both sorrow and comfort evoked by songs such as Matt Redman’s “Blessed Be Your Name.”

Yet often I didn’t even want to go to church. How could I sing songs like Don Moen’s “God is Good All the Time” when Kenna was dead? How could everyone else be so happy when I was consumed with grief? I had little desire to pray or read my Bible.

Ironically, it was a year before I realized I was angry at God. Since I became a Christian at age eleven I had trusted God, and He had never let me down. Even when my father died from a heart attack when I was seventeen, I had felt God’s provision for my family and did not question His will. But now anger, distress, and emptiness entered my life and stayed for a long time. I never doubted God’s existence. But I doubted his goodness. I knew that bad things happen to “good people,” Christians included. But this was the worst thing that had ever happened to ME and I was broken. Not only had I lost Kenna, I had lost my faith. I prayed, “I’m afraid to trust You again.…You hurt me. You gave me a child that I didn’t ask for, and when I fell in love with her, You took her away….I’m tired of doing the right things everyday. What do I get? A dead baby. This world stinks and sucks and You suck too, God.”

I found no comfort in God or His Word. However, I did benefit from Christian books such as C.S. Lewis’ The Problem of Pain, Phillip Yancey’s Where Is God When It Hurts? James Dobson’s When God Doesn’t Make Sense, Carla McClafferty’s Forgiving God, and Dan Allender’s The Healing Path. I had hit what Dobson calls “the betrayal barrier,” when our normal (but not necessarily Biblical) expectations of God are disappointed. I was miserable and depressed. Rick and my friends worried that I would abandon God, but no one ever condemned me for my “lack of faith.” They patiently loved me, giving me time and space to struggle through my doubts.

In October 2001, still angry and distrustful, I attended a women’s retreat at Richardson Springs. I had chosen to re-embrace life but I had yet to embrace God. I kept Him at a safe distance. I couldn’t seem to let go of my hurt. The speaker quoted Jesus’ question to the cripple at Bethesda, “Do you want to be healed?” I wasn’t sure. I was afraid of being hurt again. But the next day I realized that “it doesn’t matter if I trust or not because neither will prevent me from being hurt. The difference is whether I have someone to turn to in my hurt.”

Sunday morning I climbed up the hill to the three crosses above the retreat and prayed, “I choose to walk with You (and) trust You to be with me in all future hurts and losses, when I may have to walk again through the valley of the shadow of death, though I hope and pray that it may not be often or soon. Restore to me the joy of my salvation and renew a right spirit within me. I have missed you, Lord. I love you. Let me feel your love again.”

That decision to trust God again was the beginning of my spiritual restoration. It was crucial because six months later I was diagnosed with cancer. Mother’s Day 2002 I was in the hospital recovering from surgery. In June and July I underwent chemotherapy and radiation. Physically it was the most grueling experience of my life. But spiritually, my faith remained intact, though it took several more years for me to feel consistently emotionally and spiritually strong. My loss and spiritual struggle have enabled me to empathize more deeply with the suffering and pain of others, especially my counseling clients and those who mourn.

Years later I believe that God finally answered my question, “Why give Kenna to us and then take her away?” Though I heard no audible voice, I had this distinct impression that “It was for her. She needed a family to love and care for her while she was here.” Wow. All this time I had focused on me, my grief and loss. But it was not about me. God had chosen us and given us the privilege of knowing and loving her during her short sweet life. Kenna’s life had meaning and purpose and impact. Each one of us is precious and each day is precious, no matter how unimportant it may seem.

After Kenna died, Tamalyn asked God to “please help Kenna do well in heaven and please help us to do well without her.” God has taken away our sorrow and given us joy.