So, we are in the car. Everyone is in their respective seats. We are all looking forward to our vacation. The car is filled with suitcases and excitement. Then, I hear the dreaded sentence from my youngest boy: “Daddy, my leg hurts.”
My wife and I look at each other and instantly know that the right thing to do is to look at the leg and infuse now. Our youngest knows when he is having a bleed and what starts as a statement that his knee hurts will turn into something much worse in a very short amount of time. Our goal in these situations is to infuse as fast as possible in the hope that the bleed is contained and stopped.
We look at the bleed and determine that the best course of action is to go to emergency care at the hospital. Nothing is worse than having a bleed on the road. Despite our frustration, we decide to make a detour to the hospital. We know the doctors, and they know our son.
After the hematologist looks at the bleed, we hear the dreaded news: My son needs to be admitted to take care of the bleed. “You’re kidding, right?” There goes our holiday. Our vacation will now be spent in the hospital.
We are beyond disappointed. This trip was a dream vacation. We can’t go. We needed this time away from the crazy world. We are sad that once again, our best-laid plans were put on hold by a bleeding disorder.
As I pick up my jaw off the floor, I am forced to process what has occurred in just a few short hours. I look at my son and think to myself, “I must be cautious at how I approach this. He will see how I react. My behavior will determine how he feels about himself.” The last thing I wanted to do was to make my son think that he ruined our trip. This bleed is not his fault. It is merely something that happens as a result of having a bleeding disorder.
I begin to try to figure out a way that we could experience a different kind of vacation instead of the one we had planned. We still had the opportunity to find joy in every situation. Maybe the essential part of the holiday was to connect with my family, regardless of the circumstances. The key is finding joy in everything. That is what I want my son to learn from this situation.
It dawned on me that while I can’t control when and where a bleed will occur, I do have some say as to how I will react to my environment. That is where we all have some control. The problem is being aware of our choices by claiming our power. We teach the lesson of being thankful in all circumstances. We were not grateful that we didn’t get to go on our trip, but we were thankful that we were together and that we were in the care of an incredible team of nurses and physicians. Our joy is about the journey, not the destination.
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.