Caeleb is super excited about starting the seventh grade this week. He loves the new town we are living in and is hopeful for the school year. He wants to play basketball. Now, most people would say that is a normal thing for a 12-year-old boy to want to play, however, his only experience has been playing in the front driveway over the summer. And he plays to have fun, not to compete.
My mighty warrior wants to be on a team and seems to think he has all the necessary skills to show up, try out, and make it. I am not the “you can do anything you want to” kind of mom because he has yet to discover his athletic abilities. It is going to take him some time, and I don’t want him to be disappointed. Mostly, I don’t want him to hurt himself physically.
I try to encourage him to work on his golf skills, but he wants to run up and down the court. The truth is that his knees and ankles can’t keep up with those of most kids his age. Yes, that is not the most important thing. Athletics build character and are good for your body, but I just want my son to ease into these things that are new to him. And for the first time in his life, athletics are possible.
I took Caeleb to see his hematologist, Dr. Shirley Abraham, so that she could check his progress with Hemlibra (emicizumab-kxwh). During our appointment, the subject of sports came up. Dr. Abraham told Caeleb that as long as he still has his port (it is a high-profile port, meaning it sticks out much more significantly than most), he will need to protect it and be cautious. She told him she might consider taking the port out in a few months, and until then he needed to take it easy. His shoulders immediately dropped, and his eyes looked down to the floor. He was devastated.
Then she reassured him, saying: “Now, Caeleb, I didn’t say never.” That’s when he looked up at her and realized for the first time his hematologist did not say “no.” I was relieved. I didn’t have to be the bad guy. I realize that may sound terrible, but unless our children hear decisions like these from the lips of the doctor, they may question us. I think we all experience that from time to time. We need to hear things straight from the “horse’s mouth” to understand the impact of our decisions.
We left the appointment with hope. Caeleb did not get the answer he wanted. However, he is hopeful that eventually, he can play on a team at school. For the first time, he has been given the OK to do something he has longed for, without hemophilia stopping him.
I think I’ll be lacing up my shoes and practicing my free throws tonight.
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.
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