One of the primary challenges in a family, with a child who has a chronic illness and another who does not, is how to make sure the healthy child gets enough of the right kind of attention. It's so easy to focus on the child who requires a daily, time-consuming regimen and so easy to take the healthy child for granted. At one point, Vanessa, who does not have CF, expressed to her aunt (my sister) that she didn't think we loved her as much as Holly, because we didn't spend as much time with her. She was too young to understand that most of the time we spent keeping up with Holly's regimen was not fun time -- not for Holly and not for us.
I decided to do a reality check to see if we really were neglecting Vanessa in terms of the amount of attention we were giving her. My sister reassured me that from her observation it was not reality. However, I realized that what was important was Vanessa's perception, and we needed to make some changes to reassure her that we loved her just as much as Holly.
So, we decided to spend more one-on-one time with her, playing her favorite games, reading her favorite books. Personally, I also made sure that during my time with her, I was really connecting -- looking her in the eyes -- making sure she knew she had my undivided attention.
When Holly was hospitalized, we faced different challenges. As much as possible, we tried to keep the family together. Naturally, Holly avoided hospital food as much as possible, so I would bring their favorite casseroles, pizza or hamburgers to her room. We would all eat together, then, if homework was complete, we would watch a movie together until bedtime. Occasionally, my husband, my sister or I would take Vanessa by herself out for dinner and a movie while the other stayed with Holly. The balance was always precarious. Because we didn't want to swing too far in the other direction so that Holly would become jealous of the time spent with Vanessa outside the hospital.
Another challenge centered around food. When Holly was growing up, the CF Foundation had a program called 100 Percent Plus. It focused on ensuring that the children with CF got 100% of the nutrition that they needed, plus as many extra calories as possible in any form we could provide them. They recommended things like soda and candy bars, because they provided a lot of dense calories. In other words, Holly didn't have to eat a lot to get a lot of calories.
Well, try explaining to a six-year old why her sister can have two or three candy bars a day, as well as an equal number of sodas, and she can't. I pointed out to Vanessa that Holly needed to eat those things to stay healthy but that those same things were not good for her. Yeah, right. She didn't get it. Favoritism again, or so it seemed to her. So we compromised. Vanessa could have half a candy bar and one small glass of soda. That seemed to satisfy, not only her sweet tooth, but her desire to be treated the same as her sister.
It always seemed to be a tight wire, because Holly would see the unfairness in the fact that she had to spend between 45 minutes and 1 1/2 hours a day plugged into a nebulizer and getting CPT (We called it pounding.), while Vanessa was free to play. That required explanations that because of that time spent doing treatments, she could then be healthy enough to play. Naturally, that resulted in protestations of, "It's not fair!" My only response to that was, "You're right. It's not fair, and I hate that it's this way. But it is, so let's try to make the best of it." That seemed to help, though some time of pouting usually followed.
I finally realized that I had to make sure I treated each of the girls as individuals, meeting their own unique needs and hearing their thoughts and feelings about their lives. We did the best we could to be fair, and then I had to just let it go. Total fairness in this type of situation is impossible, and each child is, at one time or another, going to believe that they're getting the short end of the stick. It was up to me to make sure each child knew beyond a shadow of a doubt that she was loved. And, at the end of the day, that was the most I could do. I learned a lot about love and about loving each girl in the way she needed to be loved, because they each perceived it in different ways. They still do. So in teaching them, I learned valuable lessons that I hope I never forget. My children, and now my grandchildren, are still my best teachers!