In His Image

When I gave a devotional at last year's physician's conference at Focus on the Family, I spoke on the value of all human life, using my daughter as an example. Little did I know then that my family and I were enjoying our last weeks with her here on Earth

Maddie had special needs; my wife, Lisa, called them "constant needs." Maddie had an interstitial deletion of the long arm of chromosome 2, so rare that geneticists at a Houston clinic said that what she had would never be named or categorized. They asked us questions; when we asked them questions, they shrugged and never knew the answers. Lisa and I were tested to determine if we could be normal carriers of this deletion. We were not. The chances of a recurrence were roughly one in 10 to 20 million. Maddie was unique.

We tube-fed Maddie for nearly a year following her birth. She learned to walk when she was 3 and could say hi — sort of — by waving her hand and uttering "haaaa." (We lived in Texas at the time, and that's how most say hi down there anyway.) At age 8, she weighed 27 pounds and had a mental age of about 18 months, understanding some words.

Maddie filled our life, often with macaroni and cheese (her favorite), diapers and "Barney." Lisa and I barely survived at times. We understood why the divorce rate for couples with high-need kids was 70 to 80 percent. We had friends who loved and prayed for us, and Lisa's mom helped with Maddie a few weeks every year, enabling Lisa and me to carve out some time for ourselves.

All things considered, Maddie was fairly healthy, especially after we moved to Colorado Springs in summer 1996. Then last fall, we found out that she had primary pulmonary hypertension, resulting in a large amount of tricuspid regurgitation and right-sided heart failure. After an echo and a cardiac cath in November, the diagnosis was confirmed: She probably had less than six months to live.

We sat with her in our van outside the cardiologist's office, and while she ate macaroni and cheese, Lisa and I cried. Maddie began to laugh at us — for some reason, she always thought crying was really funny. She laughed so hard that we began to laugh with her.

In the following days, she developed symptoms of low cardiac output: her color wasn't great, she slept longer and she tired easily. We made plans to be with our families and friends in Cincinnati for Christmas and looked forward to celebrating her 9th birthday on Jan. 2.

Saturday, Dec. 11, was a great day for Maddie. The entire family went Christmas shopping, and later she played in the empty bathtub with her golf balls — a favorite activity. While going to sleep that night, she began to vomit, not an unusual occurrence due to her large amount of gastric reflux. However, her cardiologist had told us her vomiting could be dangerous, potentially causing her heart to slow and her cardiac output to fall. She seemed okay for a few minutes, but then her eyes grew dull and vacant, and she became unconscious. Her pulse was very slow. We tried O2 and CPR, but her heart finally stopped about 20 minutes later. As Lisa said later, it was her day.

Maddie, with all of her seeming deficiencies, was unmistakably human. Yet if tests had been done prior to her birth, many may have suggested taking her life. She certainly had value in our eyes, but even more so in the eyes of an everlasting and powerful God. Genesis 1:26 states that she was made in the image of God. He gave her value, long before we did. Maddie was not the perfect child, but neither are any of us. Lisa and I miss Maddie, as do Chris and Brianne, her brother and sister. In one of his letters, C.S. Lewis said, "We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be" (Letters of C.S. Lewis.)

We know she is in a better place, but we still hurt. She was a part of us, part of our family. How can you miss someone with whom you never had a deep conversation? We discovered words aren't always necessary. Maddie communicated very simply: taking you by the hand to the refrigerator when she was hungry, or climbing into your lap when she was scared or tired. Sometimes I would notice Maddie waving and looking very intently at something in a corner of the room or up the stairs; I wondered if she saw things that we couldn't. Were angels in the room? I'll ask her that in heaven.

A month or two before Maddie died, Chris asked Lisa if Maddie would be able to talk in heaven. Lisa said that she probably would, and that she would not need diapers. Chris got teary-eyed, and he said, "But I like her the way she is."

So did Jesus, Chris. So did Jesus.

Background Information

Journey of No Return
Sometimes as parents, we have a knee-jerk response to our kids as we're barraged by their numerous inquires and desires. Maybe it's time to stop being so negative.

When Not To Discipline
Parents should recognize when they should and shouldn't discipline their children.

When You Feel Like Calling in the SWAT Team
Are your children constantly testing you? This classic parenting advice will help you regain the upper hand.

Questions and Answers

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