Gradually Letting Go: A Mom’s Hope as the School Year Approaches
My son Caeleb begins his sophomore year of high school in a few weeks. Before school starts, he will participate in summer band.
Summer band was a highlight of my high school days. Even marching outside in the heat was fun because working with a tightknit group to put on an exciting, quality marching show was tremendous. I am glad Caeleb will have this opportunity.
With Caeleb beginning his school activities, I think about the “what ifs” that lurk in the corners of my mind. What if Caeleb is unable to keep up physically? Will his classmates call him names or say he is faking his condition? Will Caeleb ask for help if he needs it?
My son has a long, complicated 15-year history with hemophilia and an inhibitor. For many years, his condition kept him from enjoying normal activities for a young boy. However, now that his bleeding disorder is well under control, it is easy to forget his limitations.
I plan to meet with the school nurse to ensure she understands Caeleb’s condition and gives appropriate information to his teachers. This meeting will be different than the meetings I had when Caeleb was in elementary school. Instead of cautioning his teachers to look out for a swollen joint, to call me after a hard fall on the playground, or to allow Caeleb to use ice on his knee, now I am giving a background on how things used to be for my son.
Caeleb’s teachers will see a tall, goofy, 15-year-old boy who carries a hefty dose of awkwardness. They will see a boy who is passionate about drawing and creating and realize that he sometimes needs extra encouragement. His teachers will not see the pain he feels from a bad knee that has spots where bone rubs on bone. They will not know that he has endured more pain in his 15 years than most adults. How much do they need to know?
I want people to see my son for who he is and not what afflicts him. While I do not want people to point at my son and call him out for his differences, I know that informing the ones that watch over him is essential. My son is older and capable of advocating for himself, but the mom in me wants people to understand that Caeleb is not just unique and curious. He is a young man with life experience that the typical high school kid does not understand.
Part of me is anxious about the upcoming school year. I have three more years of caring and advocating for my son in a way that will change when he turns 18. Until then, I will be his fiercest advocate. I will encourage him to share his condition with his circle of new friends. I will keep working to help him take complete control of his bleeding disorder. There is only so much a parent can do until the time comes for the child to pick up where we left off.
So many years of heartache have passed to bring my son to this moment. His final years in high school can be life-changing. All the pain, grief, and loss have culminated to this time, and Caeleb is experiencing a freedom like never before.
I would not change a moment for where we are now.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.