The Mom s Club

I saw her at the hair salon. I knew her baby was in the intensive care unit at Georgetown University Hospital. Tears streaming down her face, she talked quietly to another stylist. I knew then she had joined my club.

My club is Moms of Chronically Ill Children. No one ever wants to be in the club, but once you're in, you have a unique perspective. It's the ability to walk around thankful for every day. When others are tired of child care duties, the moms in my club are thankful to have child care duties at all.

When you meet another club member, you instantly recognize her steely determination to keep her child alive and functioning. You know that, like you, she gives up most of her personal time, her carefree moments with friends or spouse, and her ability to parent effectively the siblings of that child. You know that this mom is wary, she is hardened, and she is bewildered. You see her in doctors' waiting rooms and in cafeterias of hospitals everywhere, where she sits and wonders, "How did this happen? Why am I in this club?"

For years, my husband Eric and I tried to avoid the inevitable; our daughter Allison needed a heart transplant. That time consisted of dashed hopes and failed efforts to find an alternative to what doctors said was "trading one disease for another." Transplants are not a cure.

The early days are the most shocking, when the diagnosis is fresh and the reality of the situation has barely broken through your wall of denial. You keep wishing you would wake up from the nightmare. But as time passes, the duties of caring for that child become more routine. You begin to program yourself to do things that health professionals are well trained to do. Although you are baffled at the prospect of administering medicines and using whatever medical equipment might be required, you learn to do these things in a sleepless state.

The nights are the most difficult, when you're alone with your thoughts, your questions. Did I cause this? Did that glass of wine I had when I didn't know I was pregnant lead to this? Why is it my child who must suffer? Why is it my family that must endure separations, isolation and endless medical appointments?

Soon, you discover there is no answer to these questions. You are reassured by friends and loved ones who promise it's just bad luck, or maybe God's will. You lose your faith, just when you needed it most. How could a benevolent God sanction this attack on an innocent child? Then you flop to your knees with guilt and pray feverishly for forgiveness, for tolerance, for second chances. Sometimes when you get it, you can't tell if it was God, the doctors, or that four-leaf clover your cousin mailed to you and is now taped to the hospital bed.

Allison barely survived the waiting. During the weeks in intensive care, I watched cartoons with her, horrified that someone else's child had to die to save mine. The daily landing of the helicopters made her wonder, "Is that her heart?" Was it today that her new heart would arrive on the roof of the Children's Hospital of Pittsburgh while we waited below? That's what Allison believed. We couldn't tell her the truth. I said, "Somebody didn't need their heart anymore. They will give it to you."

After a three-month stay and the placement of a healthy heart into the tiny malnourished body of my four-year-old, we gathered up the items people had sent to us. She sat in the midst of twenty new stuffed animals and crowed excitedly, "I've got a zoo in my room." I turned away to hide my tears from her wise eyes. I will never forget who sent her those cuddly friends, the only ones she had for many months, because we named them after the people who sent them. We still have Peyton the monkey, Mary dog, Aunt Carol doll and Mr. Maloney bear. Although my growing-up girl, now a teen, no longer craves the company of her old friends from her zoo, I can't bear to give them away.

With these memories as vividly preserved as my first kiss, I never forget to send a soft and funny stuffed animal to a child with an illness. It may seem unimportant, but only moms in our club understand their value both to the sick child and the mother. In times of grief and stress, the smallest things can offer the most comfort.

Life after a long hospital stay is like re-entry for an astronaut. Walking in the light of day on a street with trees feels like a religious epiphany. The world went on without me, while I lived in the cocoon of the hospital, with its beeps, crying babies and nighttime interruptions. With time and reassurance from the nurses, I learned to administer her medicines, swab her mouth, and change her bandages.

Those last days at the hospital, we lived for our release papers; the time away from fresh air and birds singing feeling endless.

Then it arrives. The day and the hour and the minute you and your child leave the hospital and walk into the sunshine. As relieved as you feel, a new panic takes over, when it's only the parents and their girl. Confusion is the state of normal. Did you give her the right medicine, and what happens when she spits it out, or refuses to eat? How will she survive the fever or the fluid in her lungs from exposure to other kids during one blessed hour playing in the park? Was it worth the fleeting laughter, the minutes of joy? Perhaps it was. Her doctor says, "We don't give a child a transplant so she can live in a bubble."

Back in the real world, you discover that the club continues to add new members. You watch when the new mom is initiated with a shake of your head. You know what's coming and it isn't pretty. She catches your eyes in a new way. Now she understands why you've always looked so panicked and afraid. Of course, club members envy those other mothers with healthy kids. When one complains of an ear infection or strep, you feel like laughing in her face.

So that brings me back to the mother from the hair salon. Will she look at me with a new appreciation for my badges of courage? Not yet. It's too raw, and you feel so alone in the beginning. Down the road, she'll be the one who remembers to call when my daughter goes into the hospital for tests. She'll bring dinner over afterward. Often the love for your child drives you to do more and be stronger than you ever imagined. Some, like my friend Jillian Copeland, who founded a school for children with special needs, make a difference for other families too. Now, her son will have the education of her dreams.

And though you don't want to join us, you will find solace in your fellow members. We are there to back each other, with compassion and understanding. So that's the small consolation in this life of worry. You are not alone.