A Child's Confidante

By Diane Moore, Executive Director, Striving for More

It’s a fact that children do not usually share their feelings of fear with their parents in an effort to protect them. This was something that I learned along my daughter Colleen’s journey. I wish someone had told me this when she was first diagnosed. I would not have stopped trying to engage her, but I would have been sure that she always felt that she had someone to share her feelings with. This is probably my one regret about her journey. I hate thinking that she might have felt alone with her fears. And looking back, I know that she did.

This is what fuels my passion for founding the nonprofit organization Striving for More. I don’t want any family or child to feel alone on this journey. I want them to know that someone else has been where they are today and has felt what they are feeling.

When Colleen was initially diagnosed, she received excellent support. In fact, we all did. However, after we changed hospitals to receive medical care more targeted to her diagnosis, we discovered that emotional support for children with cancer and their families is not consistently delivered throughout the Triangle.

Although she was receiving excellent medical care, no support groups were available and no child psychologist was on staff. There were only two child life therapists shared across 12 pediatric units, and therefore they rarely visited her. A pastor never visited, and although a social worker visited frequently, she was not prepared to provide clinical talk therapy to Colleen or our family. This left a big gap in her care, one that I knew would be problematic.

I tried my best to circumvent problems. I felt that I gave Colleen endless opportunities to express her feelings. Even though it was a very difficult conversation—one that I did not want to have—I came right out and asked her hard questions in an attempt to open the lines of communication.

Our older daughter has been treated for anxiety and depression since she was very young, and I went to her therapists and asked for advice on how to encourage Colleen to express herself. They suggested that I add a “feeling faces worksheet.” This worksheet was an exercise that we added to our daily routine in order to encourage her to express her feelings about each day. It had three sections: The top section was a blank face where we encouraged her to draw the face that represented how she was feeling that day. The second section was a numbered list where we encouraged her to write the three best things that happened that day, and the last section was available for her to write things that she wished didn’t happen that day. Sometimes, this worksheet triggered powerful moments of dialog between us, and that’s why I believe it’s a great way to enhance the daily communication with your child. (The feeling faces worksheet is available for download from the Striving for More website. Go to www.striving4more.org, and click “Tools” under the Community tab.)

Unfortunately, Colleen needed more support, and her depression became more severe. I knew something had to be done when Colleen’s tutor told me that Colleen confided that she wanted to kill herself.

I looked for therapists in our community who felt comfortable treating her, but that proved very difficult. Most are not equipped to handle terminally ill children, and when I did find one willing to accept her as a patient, Colleen was highly resistant to leaving the house on yet another day. She was in intense pain, we were already having to get in and out of the car to travel to the hospital to receive chemotherapy and raditation four or five times a week. She would arrive at the therapist’s office angry and resistant. It wasn’t working out the way I had hoped, and I decided to pursue other alternatives. I took a closer look at Colleen’s tutor. She was not someone that I knew well but she was a nurturer. She spent a couple hours two times a week with Colleen. I decided that I would ask someone I trusted to become Colleen’s supporter—an adult best friend. Someone she would feel comfortable sharing her fears with.

Enter Jill and Kai, two neighbors whom I respected in many ways. It was important to me that I respected their spiritual beliefs and parenting styles, and that they respected the decisions that my husband Vince and I were making for Colleen regarding her health and treatment. I confided in them regarding the full nature of Colleen’s condition. I wanted to make sure that they recognized that taking on this role was not only a commitment to Colleen, but it meant falling in love with a sweet child who was destined to die before her next birthday.

I was asking a lot. I knew it and I needed to make sure they knew it too.

I asked that they visit one to two hours, twice a week and just spend time with Colleen, and that they do something that would encourage the dialog to flow. They both agreed and the visits began. It was nothing unusual to Colleen as she had visits from many people; however, these visits quickly became her favorites as they were consistent and special. They did crafts, read poetry and learned magic tricks together.

These women were an amazing blessing to all of us but especially to Colleen. Although I respected the privacy of conversations that went on between them, I do know that she felt comfortable enough to discuss Heaven with one of them, and I am very thankful for that.

This article was written by Diane Moore for www.TouchedByCancerMagazine.com.  Moore is the founder and executive director of Striving for More, a Triangle-based nonprofit organization dedicated to ensuring that children with cancer and their families receive quality emotional and spiritual support. Visit www.striving4more.org for more information.