For Baby Lily

The post on the “Caring Bridge” website was sobering.

“Kinley, the baby girl in the room directly across from Lily is being taken off the list today. They are turning off all machines. Kinley will die today. Surely she will be a guardian angel for the other children on the unit. Please pray for her family.”

The post came from Lily’s parents, Michael and Cheyenne. Lily is their 9-month-old daughter who was born with CMV, a common virus that causes chickenpox and shingles.

It’s harmless unless the baby is infected before birth. If that’s the case, the child can develop serious health problems. In Lily’s case, this cruel and silent virus destroyed the left side of her heart.

Michael and Cheyenne found themselves in a New Orleans hospital a few weeks ago receiving news that would devastate any parent – their baby daughter needed a heart transplant or she wouldn’t make it.

Most of us never have to face a life-and-death operation like this for our children. I cannot imagine what those young parents felt like as they watched their daughter struggle to live.

In Lily’s case, a human heart became available almost immediately, and Lily became a donor recipient. In the midst of their joy, Michael and Cheyenne asked for prayers for the family who’d lost their child.

Lily’s been slowly improving since the transplant, and we all feel a mixture of elation for Michael and Cheyenne and admiration for all the heartbreaking decisions they’ve had to make in the last four months.

Before I had children, I dreamed of all the fun activities we’d have together – dressing up for holidays, coloring together and going to the park to fly kites. It never occurred to me that along with the fun times would also come tough situations.

Those include frantic trips to the hospital emergency room and the terror a high fever brings when it’s 2 a.m. and you’re the one your baby is depending on to take care of business.

Parents face hundreds of unexpected moments in their child’s life, the ones where things are normal one minute and hanging in the balance the next.

Those start the minute they get here, and we kid ourselves into thinking the day will come when we’ll no longer worry about our offspring.

When they’re infants and cry inconsolably, we worry because we don’t know what’s wrong. Those nights last forever, as do the nights when they’re young children and they’re crying because of a stomach ache.

Then there are the nights when they’re adolescents, worried about their appearance or that they don’t have any friends. They turn into teens, and we worry about drugs, alcohol and premarital sex.

Every day, parents wonder where they’re going to find the strength to be an effective mom or dad. The parenting books don’t mention what to do about a tired that seeps through your bones.

They don’t offer solutions to feeling like you want to scream at the top of your lungs in frustration. They don’t tell you what to do when you receive news that your child could be facing a terrifying health issue and you have to make difficult decisions.

Books don’t tell parents what to do when they grapple for the answers with every ounce of strength in their bodies. We ask friends, family and experts to help us make a decision, but our children, whether they’re 9 months old or facing mid-life, are where we find the answers.

With one hug and one smile, we find the strength to go on without a moments’ hesitation and know that the tough decision is usually the right one. Because no matter what cards we’re dealt when a child is put into our arms, we will play that hand and never, ever fold.

In Michael and Cheyenne’s case, they’ve always known they had a winning hand with Baby Lily who’s getting better every day, thanks to a difficult decision another set of parents had to make.

They found the strength to give the gift of life to another child. And for that heart-wrenching decision, we are eternally grateful.

This column was originally published in The Fort Bend Herald.

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