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Infusing Love: Normal Is as Normal Does

As I have become more involved in the hemophilia community over the last few years, and read more stories online, it is evident that each person with hemophilia and the people caring for them have such different experiences with bleeds and treatments. When Chris was young, we were told Chris wasn’t your “typical” child with […]

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Infusing Love: Respecting Our Elders

I have been thinking a lot about my role in my bleeding disorder community as Max becomes an adult. Where is my place as a mom of an adult son with hemophilia? I have been given the gift of having a job that keeps me connected and involved, but what about the other old timers? […]

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Infusing Love: Growing Our Family

Time moves so quickly. As adults we blink and a year has passed. As kids, we couldn’t wait to be adults. I feel like it was just yesterday that we were adjusting to life with one itty-bitty baby, with a chronic condition. Now we are in a routine, his disorder is well managed, and he […]

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Infusing Love: Aprendiendo a vivir con un nuevo diagnóstic

von Willebrand Disease… ¿Qué es eso? ¿Qué clase de enfermedad tienen mis hijas? ¿Es contagioso? ¿Qué le puede pasar? Esta y muchísimas preguntas más fueron las que nos hicimos el día en que la pediatra en Albany, Nueva York, diagnosticó nuestra hija menor, Juliemar, 8 años a este momento, con von Willebrand Disease (vWd), tipo […]

Infusing Love: No (Wo)Man’s Land

My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn’t particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]

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Infusing Love: A Mom Intervention

Benny starts high school this week. How did that happen? When I started working at HFA he was in kindergarten. I remember being amazed at his astounding ability to put 100 piece puzzles together at 5 years old and spend hours building things with Legos. At the start of second grade, despite untold hours trying, […]

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Infusing Love: Thank You to Our Teachers

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]

Infusing Love: A Picture is Worth a Thousand Words

I was cleaning out my closet recently and found an old picture of Nick stuffed in the pocket of a purse. My first thought was, “Man, he was a cute baby.” My second thought was, “That was right before he had a spontaneous epidural bleed.” Nick was eleven months old, in daycare, and not walking […]

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Infusing Love: Speaking Pokémon

Thirteen years ago, I had to learn a new language. Like any new language learning, it began with learning how to spell. Our day-old son was cradled in my arms when the phone rang in my hospital room. Thomas had been bleeding from his circumcision site since the day before, but I honestly wasn’t overly […]

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Infusing Love: Careful What You Say

I had a “Hemo Mom” moment of synchronicity earlier this summer. In my last Infusing Love post, “Superheroes Need Rest Too,” I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four  -month-old twin siblings. Marques eventually […]

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