I forgot to add my final reflective point on my recent review of Kase Johnstun’s work, Beyond the Grip of Craniosynostosis. In some ways it is the most important for me.
4) There are references described in two of Johnstun’s parent interviews to some very similar experiences that we have had, both while Zoey has gone though testing in the NICU, and also in recovery on a hospital floor with other infants and children. Within the world of pediatrics there seems to be a large spectrum of severity when it comes to procedures and recovery. While cranio kids definitely rank high among the level of surgical skill necessary, as well as possible negative results, there is a specific timeframe which families are asked to endure. The vast majority of cranio kids will return home within five days of arriving for pre-op care. Some things have changed, but for the most part, the storm passes once the patients return home. While knowing this, we as parents encounter all sorts of other children on these recovery floors. Some battling cancer, muscular debilitating disorders, uncontrollable seizures, organ failure…the list is as dynamic as the children. In places like that we are reminded as cranio parents that, while we have a few days within five years of heart-wrenching struggle, we can expect to go home. Our kids are the strong, resilient bunch of this group. When we hold our heads up long enough to look around, we realize we are the blessed families. Yet there is enough struggle for us personally that it is not hard to feel deep empathy for the children and families who will spend holidays and birthdays in those rooms.
Side note: One of Zoey’s surgeries was a few weeks before Christmas, and we got a picture with a visiting Santa. As I spoke with a wonderful nurse about it, she lamented that she wished more Santas came around outside of December for the kids in and out year-round. I hope to have the persistence to help bring a Christmas in July to that floor one day.