Roadmap Needed: How to Help Parents Navigate the Worst Day of Their Lives

On January 14, 2010, our 3–year–old daughter, Maggie, was rushed to an emergency room at a satellite medical center. I am an occupational therapist and was actually scheduled to work at a hospital that day. I was wearing my purple scrubs. Maggie had been showing “strange” symptoms all week that I thought might be a sign that she was getting a cold or the flu. She had been extremely tired, having morning headaches and ataxia (balance problems). When I dropped Maggie off at preschool the morning of January 14, 2010 she began to have trouble using her left arm. The teacher noticed that her smile was crooked. I did a quick neurological assessment and saw that her left arm was much weaker than her right arm. I thought to myself, “My kid looks as if she is having a stroke. But she is only 3–years–old. This doesn’t make any sense.” The teacher gave me a look as if to say, “Are you going to take Maggie to the hospital or am I going to have to do it?” I just stood there. I suppose I was in the first stages of shock. I turned to the teacher and said, “We are going to the hospital.”

As we walked toward the ER admissions desk I was surprised to see that we were the only people in the waiting area. It didn’t take long before we were called into the examination room. The ER doctor did a neurological assessment on Maggie like I had done only 30 minutes earlier and said that a CAT scan was needed. He thought that we would most likely be transferred to a local children’s hospital. The CAT scan revealed that Maggie had a large mass in her thalamus. I just looked at the ER doctor and said, “Just tell me what I need to do and I will do it.” No tears, no screams, no emotion. I just went into “mommy mode” and made sure that my child felt safe every step of the way. My husband was on his way home from a business trip when I called to tell him the news. He had no idea what he would find when he finally got to us.

As expected, we were transported by ambulance to the local children’s hospital. I remember sitting in the front seat with the driver and feeling like this was all a dream. It was all very surreal. Maggie calmly chatted with the EMS personnel in the back of the ambulance as if nothing was happening. I had no idea how our lives would change once we reached the hospital. This ride to the hospital began our journey into uncharted territory. Nothing in my life had prepared me for what was about to happen.

We arrived at the children’s hospital around 11:00 a.m. As we walked into ER department, I could feel the eyes of the ER staff following us. I turned to look at them and they smiled. The look on their faces told me that something was very wrong with my daughter. I felt like we were a sideshow at the carnival. I hated those looks. I didn’t want their smiles. I wanted to know what was happening. I wanted information.

My husband arrived about an hour after our arrival. He walked into the room and found his little girl looking very spacey and unable to walk to him without falling. When Maggie and I stepped out into the hallway to find the restroom, I turned to look back into the room and saw my husband with his face in his hands. He was crying. I was not. I was still in “mommy mode” or just plain shock. I knew that my daughter was not well. But then again, neither was I. I was not crying. I was not screaming. I was numb. What I needed was someone to take my “emotional pulse.”

We waited patiently in that small room watching the hours pass by as each doctor came...