If You Would Only Listen

by Elizabeth Woodcock

Yesterday, I ran across the email that I had sent to the clinician at the premier children’s hospital in my city. I had spent more than an hour composing the email, explaining that my daughter was losing weight and my fears about the possibility of an eating disorder were mounting. I felt lucky that my daughter had agreed to an appointment with her.

A mere days after my daughter’s 18th birthday, the clinician called me. “No signs of an eating disorder,” she declared. I hung up the phone, and watched my daughter from the next room smile. I tried not to look defeated, but she knew. She refused to eat dinner that night – and for many nights thereafter. The demon had been unleashed.

If you would only listen…

After only a few weeks, my daughter’s condition had clearly worsened. I tried another avenue again – her pediatrician. That resulted in calls, faxes, and referrals. And waiting. Her pediatrician agreed to see her while we were anxiously anticipating an outpatient treatment program, but the visits were on telemedicine. Since she couldn’t see what I saw… My daughter wasting away in front of me. I called, asking her to admit her to the hospital. Movements were slow. Her clothes hanging off of her body. Sure, she was still eating, but it was so little… “She won’t get in trouble, unless she gets to the mid-90s,” she explained.

If you would only listen…

I could see the disease in her eyes. Twenty pounds lost in a matter of only weeks; the rapidity of the weight drop was draining her life away. I couldn’t wait any longer. I locked the doors to the house, and told her that she had no choice but to get into the car. It was the worst ride of my life. Checking constantly in the rearview mirror to make sure she was still breathing between her tears and screams. I finally made it to the children’s hospital, where my husband waited. She refused to go inside, and he discovered there was a three-hour wait and decided to head home.

If you would only listen…

With my last ounce of energy, I convinced them both to go see a pediatrician to get her vitals done. They complied, and she was immediately referred to the hospital. I rejoiced. It took 13 days in the hospital to stabilize her, with her heartbeat plunging to the low 30s at night. My husband and I were now on the same page; she needed help. “The highest level of care,” they recommended. We were shuffled into a room, and they gave us slick brochures.

After determining that her age was difficult for many treatment centers; only weeks away from being an adolescent, but only technically an adult… We landed upon a small satellite facility of one of the nation’s largest residential treatment centers. Thank goodness.

The days went by. We visited nearly every day. There was no family-based therapy offered. We didn’t know to ask. I started to notice her cold hands… and white skin. I called the facility to inquire about her status. It had been four weeks, and we had no idea what was going on. We had hired the experts, paid thousands of dollars. They knew what they were doing.

Within 24 hours, I learned that she had lost a significant amount of weight; in fact, her weight was now less than she was upon admission. We called her pediatrician’s office, and they agreed to see our daughter. We picked her up at the treatment facility. Crying and screaming. She was immediately referred to the hospital, now much sicker than she had been when she arrived.

The treatment facility refused to send her medical records to the hospital, declaring that it was a holiday weekend. I had to drive over and retrieve them myself on the next business day. Four days later, I had them in my hands – and I realized what had happened. When they admitted her, they logged the wrong weight and height.

If you would only listen…

A few days into the hospital stay, she was barely speaking to us. She called the director of the treatment facility from which we had removed her. He asked her when she was going to return. She informed him that we would not let her return. He coached her how to emancipate herself. He explained the ins and outs of privacy and records releases. Using his recommendations, she did just that. All we could do was remain vigilant outside of her hospital room, with her refusing our presence. Her friends called to ask us about the declaration of her “emancipation.”

If you would only listen…

The next stop was a treatment facility across the country. A very reputable one. By this time, we knew that her medical condition was dire. They would surely take care of everything. They did not, and neither did the third facility she flew herself to. After noticing signs of distress… the cold hands, the white skin… I sent messages to the treatment team to please make sure they watched her closely. Our daughter wouldn’t let us speak with them directly, but that didn’t stop me from sending emails.

If you would only listen…

Out of the blue, I got a phone call from her therapist that our daughter had left. I was so surprised. She explained that she had violated a house rule. The next words out of her mouth, however, made my heart sink. She had been weighed that morning. A random weight – the first one, her therapist said, since she arrived six weeks prior. The scale, the therapist explained, was broken. Her weight was way too low. They were going to get it fixed that day. I knew better.

If you would only listen…

During the five months that our daughter was in the hospital and treatment centers, we had found FEAST. We had found a support group. We had found a coordinated team. We had found parents of other survivors. We had found knowledge and strength.

And so, this time, I listened to myself.

We started family-based treatment. Daily appointments. Back to the emergency room. Food. And more food. So much food that her stomach hurt all the time and she slept half the day. But I pressed on. More food. She resisted, but I knew that I was the only person who could stop the disease. It gave me unimaginable strength, even in the darkest times. After months of refeeding, slowly but surely, my daughter started to come back. The laughter. The joy. The love.

How I wish someone had listened. I believe that our journey would not have been so difficult. She wouldn’t have gotten so sick.

In the end, however, I stopped asking the question of others. I listened to the experts, but now I had the strength to ask it of myself. And this time, I listened. Because I knew how to save her from this disease… And I did.