After we got the diagnosis, we ended up speaking with a child psychologist who works with children and parents of sick children and parents. Whether you have a sick parent or a sick child, I just wanted to know how to counsel my kid through it. Of course Avery was still young but I was really wanting to know from different providers, when is the right time to do this for her, emotionally. We knew we could do the surgery between now and when she’s four years old, but to hear from different doctors, “Here’s what we think you should do,” was important to me. I wanted to gather all of the doctors’ opinions and then make the best decision for Avery. And her surgeon said it in the most straightforward way, he said, “The older they get, the harder it is,” and that’s all I really needed to hear. I was so powerless in so much of this, I couldn’t fix her heart, I couldn’t undo it, but I could make it as pleasant of an experience as possible for her. And I wanted to do right by her, I wanted to make sure I made the best decision I could. So we decided to do it right before her second birthday. We felt like we needed to be in a strong enough place.
– Jessica, mother of Avery, age 2, ASD
Gabriel started seeing one of the staff psychologists at the hospital while he was in for those five weeks. And she suggested strongly that he continue to see somebody when he got home. So he actually worked with a therapist from the time he came home, as he got older, he would start scheduling his own appointments like when he would need it. So he would see her every week, and then went to every 2 or 3 weeks, and then sometimes when he was stressed he’d say, “I want to see her.” So I think the last time he saw her was probably over Christmas break last year when he was a freshman in college and all summer and all this school year he’s never mentioned seeing her. He is going to the counseling center at school every now and then, so that’s good.
– Louisa, mother of Gabriel, age 20, HLHS
Two different times we had him see a counselor when he was in grade school. The counselor kind of joked with me that all he talked about was food. It’s funny but it was sad. He was on steroids for his asthma at the time and was overweight as a side effect. Everyone was saying to me, “You need to get him on a healthier diet” and this is a kid who, after his third surgery, didn’t eat solid food for two full months. I was offering anything! I would have given him cookies, candies, ice cream, and I did offer all of those things, he just didn’t eat solid food for two months after his surgery. So food was a big issue, and that’s all he would talk about in therapy was food. But he didn’t want to talk about his heart. He never really has.
– Diane, mother of Jake, age 21, HLHS