I met with my mighty warrior’s new principal and school nurse last week. I took my presentation, and thanks to the Hemophilia Federation of America, I was ready to teach and answer questions. Most importantly, I wanted these individuals to feel at ease and not scared of my son. As I began my presentation, I realized how things had changed. I was no longer talking about my son’s regular bleeds, and how to manage when he was in his wheelchair or using a walker. These people did not know my mighty warrior when he was suffering. They only see a 5-foot-4-inch, goofy 12-year-old who wants to conquer the world.
The principal asked, “How do we let people know, or do we?” I hesitated and said, “It’s up to Caeleb to disclose his condition.” The days of coming to class with his little friends sitting criss-cross applesauce during reading time and hearing the story “Joshua, Knight of the Red Snake” were long gone. I am no longer the Mama Bear who constantly worries about her cub.
Of course, I will always be concerned for my son, but the level of anxiety I live with has decreased significantly over the past few years. Now, I am more concerned about him “fitting in” and making friends, not letting bullies torment him, and using his almost nonexistent pause button before making bad choices. I think these may be some of the things Mama Bears whose cubs do not have a chronic illness worry about.
It is my job to help my sons’ transition into adults (one is already adulting). I refuse to be the mom who still orders her 20-something-year-old son’s factor! My boys need to be able to cook (to impress their significant others and survive on more than pizza rolls), wash their clothes (to hopefully wear their favorite holey shirt clean), understand that a debit card doesn’t work when money is not in the bank, and know the basics of car maintenance.
There are also many things to do for Caeleb to be ready to take control of his hemophilia completely. Before the school year is over, he will be able to order his own product and supplies, know all the necessary contact information (hemophilia treatment center numbers, pharmacy, etc.), and understand where his product comes from. It’s a lot, but it needs to be done early so that when he leaves the house for college, he will be able to get what he needs on his own.
I love being a mom. Handling things for my family gives me great joy, but I want to make sure that my sons launch into the world with all the good that I can give to them so that they are successful. I want nothing more than for both of them to have their hemophilia under control so that it doesn’t control them. They have more to learn and manage than most because of their condition, so they have added responsibilities to conquer. If they have the tools they need to be successful, then I will be a very happy mom.
And maybe they’ll come home and let me do their laundry.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.