Special days come up: holidays, birthdays, and vacations. We take time to relax and enjoy ourselves, but there is always something staring us in the face. Needles do not care what days may be essential or ordinary. They call to our families, reminding us that hemophilia does not have a special day. It is 24/7. There is never time to let down our guard.
So, how do we take vacations when a chronic illness is always present? The answer is that we never entirely escape. In my family’s case, my sons will still have bleeding disorders, and we will always worry. Perhaps times of escape may come when we take the time to go to a favorite destination, celebrate holidays, or even take time to play a favorite game or activity.
We move forward with needles, but we do not let those horrible sharp objects define our entire lives. Moments build on both fun and difficult times. We cannot exclude difficult experiences so that we can live in a world that is uncomplicated and easy. This is a lesson we all must share. Pain is a part of life. Attempting to hide from bad events only postpones the reality that we must face our fears head-on.
When we enjoy great times, we must not let the needles stand in our way. The pain is only a tiny part of our day. Take medicine and then have a good time. We as parents have the power to teach our children the life lessons of endurance and celebration. Yes, we will get to open the presents underneath the tree, but we must infuse first.
Hopefully, our children will grow into adults and learn the lesson that managing their care is the essential part of each day. There are no days off where hemophilia is concerned. I hope that my 22-year-old son learned his lesson well and that he practices self-care without so much as a second thought. It is a part of his DNA.
My 12-year-old is old enough to begin making decisions regarding his care. He pays attention to needles and draws up his medication into a syringe. He does this each time he injects himself with the life-sustaining product he needs. He understands the significance of caring for himself.
I admire both of my guys for their fierceness and determination. They know what to do, and they make the magic happen. Each of them knows that first things are first, and one does not surrender themselves to a full day of infusing. Treat and then have a great time on your special day. This is our motto: Let’s have some fun!
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.