It Gets Better
This article was originally published in our Spring 2024 Bleeding Times Magazine. See the entire magazine by clicking here.
Article Author: Yasmin Pavri
Yasmin has two children who are now in college. Her son has hemophilia.
I still clearly remember the first time we heard the word hemophilia. I couldn’t even pronounce it, let alone know what it meant. So, for all you families who have a new diagnosis, don’t worry. We have all felt lost, shaken, angry, fearful, and anxious. It only gets easier with education and time. The more you learn how to manage the disorder and what precautions to take at each step of the child’s growing process, the better it gets.
During the first few years, there were a lot of trauma- related injuries. Lost balance, oops. Ran too fast, oops. Tripped, another oops. Bumped into something, oops again. It felt as though nowhere was safe. But once we baby-proofed our home, that was our haven.
ER visits became easier, too, once we learned to call ahead and explain the situation before we arrived. We also made sure our son always wore his Medic Alert bracelet. It would make things much easier in case of an emergency.
School and letting go has never been easy for any parent; add a chronic condition like a bleeding disorder, and you worsen the separation. No one feels adequate to take care of your child except for you. However, meeting with the school nurse and taking time to educate all the teachers, staff, gym instructors, cafeteria, and playground aides, helped us feel more comfortable when our son was at school. We taught the staff how to recognize bleeds, what the signs and symptoms are, and what should they do if the bleed is minor, major, or life-threatening. We learned to always have a plan.
Let your child educate their class or their friends as they get older. If they play sports, maybe their coach and team, too. Encourage them to raise the level of education each year as they age. By the time they graduate high school, they will know what to do and should be ready to take charge of their own health.
At this point, when our birds have fully grown, it is time to let them leave the nest and soar to the skies. Let them leave for college in complete confidence and faith that their parents will always back them up, no matter what. This opens channels of communication, which strengthens relationships. It will be hard to see them go, and the fear, anxiety and separation never really goes away, but I am confident in them.
Keep gratitude in your hearts as kids cross each phase of their lives. Always be thankful—it could be much worse. And believe me when I say that it gets better… it truly does.
