Life with a medically complex kid can be crazy enough but throwing additional kids in the mix can cause chaos. Sometimes it’s hard for people to remember that dealing with a child who has Alagille syndrome (ALGS) is not just hard for the parents, but also any siblings who may be involved. Kids can have a lot of different emotions—anger, fear, and anxiety when it comes to these types of situations.
When I was younger, my sister started to have some concerning medical issues. Throughout the next few months, my parents would be traveling a lot for medical appointments and hospital stays with her to obtain a diagnosis. At times, they would even have to spend the night leaving to stay with my grandparents. One time I remember during a hospital admission I stayed with my dad at the Ronald McDonald house while my mom stayed in the hospital with my sister.
It was a lot for me to understand and a lot to process. At the time, I understood something was wrong with my sister, but I didn’t understand why she was getting all of the attention. People would come to visit her and bring her nice gifts. It made me extremely jealous. It was hard on me to have my normal routine changed. I went from having my dad get me ready and off to school in the morning to having my grandma there and trying to show her the ropes. Not only was I feeling jealous, but I was feeling scared. Was my sister going to be alright? Would she come home? I was worried that she was going to die. I knew enough to know what was going on was very serious.
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Now, with roles reversed and finding myself as the parent of the kid who requires a lot of attention, I do not want my kids to ever feel ignored. I don’t want my kids to feel that their brother gets what he wants or receives more of my time than them because of his ALGS diagnosis.
I try to include my kids in every step of the process. I try to explain what is currently going on in the medical life of their brother so that they are aware. They have questions and I know that sometimes they are afraid and worry over their brother and if he will be OK. I encourage open dialogue.
Lastly, I want to try to avoid feelings of jealousy or feelings of being left out by making sure I spend one on one time with each of them. I know at times my older children can feel like their brother gets whatever he wants because of his medical diagnosis. I try to make sure they know that isn’t the case.
Last summer, I set special days for each child and took them to do an activity that I thought they’d enjoy that we could do together. The day was all about them. It was not only fun for them, but I enjoyed being able to solely focus on one kid at a time. When I run errands, I also try to take turns and take them individually with me so that they can have special time with mom and even get a special treat at the store like a piece of candy.
It is so important to me that all my children feel valued—medical diagnosis or not, and that we as a family have an open, honest dialogue about the medical world and the complexity of ALGS.