When my son, Julian, began middle school, I kicked his hemophilia education into high gear. He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the necessary amount of supplies and factor on hand. It was going very well — until high school.
Like many teenagers with a bleeding disorder, Julian became complacent with his care. His little brother had suffered from extremely painful bleeds and I always thought that seeing his brother’s journey would encourage Julian to keep factor in his system. Despite this, I could not understand why he was so opposed to infusing per the doctor’s orders. I often thought that maybe his lack of interest in routine infusions was because he never really suffered any awful bleeds. Maybe if he did have a really nasty bleed he would think twice before not infusing like he should! That is truly a horrible thought, but Julian is one of the very fortunate ones who have not suffered from routine bleeds. His joints are in great shape and severe hemophilia for him is really not a big thing on his radar. Some of our ugliest “discussions” were centered on his infusing schedule (or lack of one) and whether or not he had called and ordered factor (when I knew he had not).
After fighting with him for a few years about his lack of adhering to his doctor’s orders, I realized I had to give up “control.” My son was becoming a young man and I had to relinquish the management of his hemophilia. I accepted the fact that when he did feel a bleed coming on he always stopped what he was doing and immediately infused. That is a great thing! He had gone from prophy to on demand dosing, much to my dislike, but he did treat.
It’s actually about to happen: Julian is leaving home for college this fall. It took some time for him to figure out his next steps and now he is ready to move on to his next chapter. I am thrilled that he has found a place where he is going to be happy, but I worry that he will neglect his bleeding disorder. As we were touring his dorm, we realized that there was no air conditioning. He turned to me and said, “I may need to check with the clinic and see if they can refrigerate some of my factor.” I think my heart skipped a beat. He hasn’t forgotten about his bleeding disorder; he just had to do things in his own time.
The high school years were a struggle for my Julian, but he has finally started to figure some things out and has gotten to a place where he is now ready to move forward. All I can do is continue to send him some “gentle” reminders without nagging and hope that all of the preparation we started in his middle school years pays off as he leaves home. I didn’t realize how hard this was going to be. Preparing my son to leave the nest has been a difficult process, but the hopes and dreams I have for him are endless. My house will not be the same without him walking through the door every afternoon, but knowing that the best is yet to come for him excites me. And when he does come home after weeks of being away, I will know that I have done the best I could in preparing him, and that is more than enough.
Cazandra lives with her husband Joe, and 20-year-old son, Julian, and 10-year-old son, Caeleb, in New Mexico.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.