A recipe of support for parents new to a hemophilia diagnosis
My recipe card is worn and stained, but something beautiful can still come of it
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My family loves my chocolate chip cookies. I don’t even know where the recipe came from, but it’s written on a card I keep in a flowered index box I got at my wedding shower more than 33 years ago. After years of baking, the card is stained and the edges are worn. Butter and chocolate have left their marks. Every time I bake, I pull out the card and follow the recipe. Even after making hundreds of batches, I still can’t remember the measurements. Keeping the card on the counter reminds me of when I wrote down the recipe, hoping I’d make it many more times.
My mother taught me how to cook and bake. We always seemed to have some kind of mishap that made us laugh until we cried. There was the time we used red food coloring instead of vanilla, and our cakes always came out lopsided. Still, everything tasted great.
As I got older, I learned more about cooking. My mother has been gone for almost 30 years, and I owe my skills to her. I’ve even passed them on to my oldest son, Julian, who is 29. His baking skills are better than mine.
He’s built on what he learned, teaching himself more to improve his skills and make homemade tortillas. The early lessons I gave him made him curious and eager to keep learning. Learning from others and trying new things helps us grow.
Guiding young parents after a hemophilia diagnosis
Over the years, I’ve encouraged young parents by sharing what I’ve learned about raising children with hemophilia. My advice wasn’t clinical; I offered guidance to young moms dealing with fear, guilt, and despair. Sometimes, I listened to strong first-time fathers who were trying not to cry because their son’s diagnosis left them feeling hopeless.
I have always felt called to help families who are new to a hemophilia diagnosis. The fear of raising a child with a bleeding disorder is overwhelming. Raising two sons with hemophilia and inhibitors has given me a lot of experience. Still, my story is different from everyone else’s. All I can do is listen and share what I’ve been through. Often, listening and showing empathy help ease fear.
I hope that parents who are new to this condition will hear my story and use it to help build their own foundation. Their journey with hemophilia will be different, especially now that we have new, groundbreaking treatments. The joint bleeds and damage that my youngest son experienced may not happen to their child. Still, it’s important for families to know how hemophilia treatment has changed.
Families need to understand how hemophilia treatment has evolved — not to frighten them with the past, but to show them how far we have come. With new treatments and protocols, children with hemophilia have an even brighter future than my boys did when they were young.
When I look through my index box of recipes from friends and family, I remember that the dishes and desserts don’t have to be perfect. What matters is the love that goes into each try. Measuring carefully and making changes when needed is how you make something delicious. That stained card holds more than just a recipe; it holds the hope I had as a young woman, picturing my sons in the kitchen eating warm cookies straight from the oven.
Supporting parents of newly diagnosed children feels similar. I can’t give them a perfect recipe that will help them avoid fear and setbacks entirely. But I can share a well-used card, filled with stories of resilience, laughter in hospital rooms, and sons who grew into amazing men. Even with worn edges and stains, something beautiful can come from it.
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.
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