Veering From a Recipe Is Risky, but It Can Also Be Rewarding
Weighing risk versus reward while raising my oldest son with hemophilia
I spend a lot of time in the kitchen during the holiday season. I enjoy creating my favorite dishes and finding new and exciting recipes. Many people follow recipes strictly, but I find joy in realizing they’re more of a guide than an exact science.
Using a guide to cook sometimes leads to bad choices. Too much salt, not enough butter, and substitutions that don’t work can result in a meal that’s inedible. Venturing away from the instructions can change the flavor, allowing the meal to take on an entirely new, superb taste.
Veering from the recipe can be risky, but it can also lead to a masterpiece.
Weighing risk vs. reward
When my oldest son, Julian, was born in 1996 and diagnosed with severe hemophilia A, I thought my world would collapse.
Once the shock wore off, I read every piece of information I could to help me understand what my son would face. I wanted a guide, a recipe telling me what to do in case he bled. I wanted to know exactly what would happen to him and how I could help. I needed to keep him safe, and I hoped to find a tried-and-true plan.
I quickly realized that not everyone with hemophilia has the same journey. This wasn’t comforting. (Later, with a younger son who also has hemophilia, I learned the lesson again.) It wasn’t possible to know exactly when something would happen to Julian. Considering all the possibilities of what may or may not happen to my older son made me anxious.
I’m eternally grateful to the families who shared their experiences raising children with hemophilia. They helped me understand that trying to prevent anything from happening to my older son was good, but could also hinder his growth as a little boy. I wanted to follow a recipe to a T, but once I let go and allowed Julian to play freely, explore, and be a fun-loving little boy, I started to understand what it meant to take risks.
As with cooking, sticking to a recipe can keep someone from noticing other possibilities. When I began to let Julian take risks more often, sometimes they resulted in hard lessons. A fall on the concrete would cause a hematoma on his forehead, and off to the emergency room we’d go. Did he have fun until the moment he fell? Absolutely.
Sometimes Julian bled because of a fall or injury, but other times he bled for no reason. There’s not always a recipe with hemophilia.
I’ve learned that taking risks has made Julian the amazing man he’s become. I don’t regret letting him venture out. Now we stand together in the kitchen during the holidays making excellent meals and sharing our passion for food.
And most of the time, there’s no recipe.
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, and are intended to spark discussion about issues pertaining to hemophilia.