I recently saw Disney’s Frozen and I was struck by the message I found in it related to my daughter’s life. Unlike what is so often the case, this time, when I refer to my daughter, I am not referring to Alex. I am referring to Jessica. I sat in the movie theatre between Alex and Jessica. From the very start of the movie I saw Jessica in Anna. She was carefree, loving life. I saw Alex in Elsa, the protective, fun big sister. Just like Elsa, Alex was taken over by something inside her. For Alex, it was a debilitating illness leading to an awful neurologic condition and ultimately a stroke. In essence, it took Alex away from Jessica in one sweep. Jessica was kept separate from Alex’s struggles as a result of her age and the distance that separated the girls as we searched for cures for Alex. To her parents, this was our only option. We were protecting Jessica, trying to allow her life to go on as normal as possible. We even sent her on vacations with other family members while we struggled to save Alex. To Jessica, we just pushed her aside and away. We did not pull her in and make her a confidant in our battle to save Alex. All she knew was loneliness and the empty place her sister used to fill.
I continue to learn about the repercussions this had on Jessica. To Jessica, she was shut out. In a recent interview we provided for a video about Alex’s story, Jessica was asked what part she played in Alex’ recovery. Jessica didn’t know how to answer. This struck me – to me, her role was crucially important in bringing Alex back to us. To Jessica, she was still sitting on the other side of the door – locked away from her sister, from her family.
How many other siblings of critically ill children feel like this? How can we pull them in? It just might be their acts of unselfish love that can save their siblings. However, we need to be sure that in the process, they are not frozen to the point that they cannot recover themselves.
While we were fighting to save Alex, my sister-in-law and her family were fighting to save her daughter, Joely. Joely was diagnosed with Severe Aplastic Anemia shortly after Alex had a stroke. She was 7 years old. Jojo and her 8-year-old brother Jack were whisked away along with their parents by medical transport to prepare for a bone marrow transplant. Jack was to be Jojo’s bone marrow donor. There was not room for their 11-year old brother, Hunter, to travel in the plane with them. He was left behind. Left behind the closed door so to speak. Fast-forward three years and Jojo is back at home and in school. Hunter is starting a foundation to support connecting bone marrow donors with their matches who desperately need the connection. Jojo is our miracle but Hunter is our unsung hero.
This brings me back to Disney’s Frozen. Is Frozen just about Elsa or is it about Anna and her relationship with Elsa and her family? To me, it is about my daughter Jessica and all children in the shadows of their critically ill siblings. It is about them as individuals but also about fostering their relationships with their siblings during trying times. I know that I will spend a lifetime trying to warm Jessica’s heart and help her to know how much I value her as the amazing person she is and as a precious member of our family.