Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
¡Hola, mis queridas madres y Feliz año nuevo para todas! ÂżHas notado el cambio en las preferencias en alimentos en los Ăşltimos años? Hoy les hablarĂ© de lo beneficioso que es comer saludable. De porque tener hábitos alimentarios saludables nos alarga la vida para disfrutar a nuestras futuras generaciones. Nuestros hábitos alimentarios, en gran medida, […]
The staff of Hemophilia Federation of America and Infusing Love: A Mom’s View bloggers extend condolences to Maryann on the death of her son, Max. There are times as a hemophilia mom that you feel as though you can handle anything, like you could take on the world and make it a better place. Then there […]
¡Saludos nuevamente a todas las extraordinarias mamás de nuestra comunidad, un fuerte abrazo desde la distancia! Para los que no me conocen, tengo un niño de 11 años con hemofilia A, que se llama Iván Manuel. Hoy les escribo, pensando en los diferentes retos que esta pandemia nos ha traĂdo a nuestras vidas. Desde los estudios […]
Hola, mis amigas de Infusing Love Moms Blog. Soy Ana, madre de un hijo con hemofilia Tipo B, deficiencia de Factor IX moderado y vivo en El Paso, Texas. Hoy quiero platicar con ustedes de el amor, el agradecimientoy el perdĂłn. El amor es, quizá, el sentimiento mas hermoso que el ser humano pueda experimentar. […]
I have been “Infusing Love” into my son Marques for the past 18 years! I have not only been infusing him with factor, so his blood clotting levels are normal, but I have tried to infuse him with the education he needs to live a long life with hemophilia. I pray! As hemophilia moms, […]
Remote learning causes concerns for students with disabilities. Because of COVID-19, I found myself using technology as I teach and learn. I used to take for granted toilet paper, paper towel, hand sanitizer, rubber/paper gloves, rubbing alcohol, bleach and masks because it was always there at my reach. Now I have found myself shopping for these things. […]
There are new bleeding disorder side effects cropping up all the time. By side effects, I mean the extraneous things we have to manage such as insurance, genotyping and product choice. In a time before all the advancements, a side effect was learning to be an IV nurse and find a vein on a toddler, […]
My son, Michael, has severe hemophilia B. He is soon to be 28 years old. Wow! That time flew by! I remember the day we found out he had hemophilia. He was 11 days old. We were shocked, scared and ready to take on this challenge life had given us. We educated ourselves and our […]
Strong. Every January I reflect on the year to come. I chose a word based on something personal, either to myself or to our family. This year I chose the word: Strong. I chose that word specific to my goals for the year. I’ve been a consistent runner since 2015. In fact, I love it […]
Attending HFA’s Symposium has always fascinated me. I have attended a few symposiums with my family: St. Louis, Cleveland, Las Vegas, and San Diego. During symposium, I networked with individuals who were in various fields: social workers, physicians, nurses, physical therapists, and patients. Days were filled with inspirational kickoff and educational breakout sessions. There […]
We are now four or five months into this very bizarre time of the COVID-19 Pandemic. If you’re like me,  you’re not getting any more used to this “new normal” but rather more than ever, ready for it to be over. While we may be ready to get back to life the way it […]
You know what I miss? You. I miss you. I miss looking into your eyes, I miss tearing up when I try to explain my struggles and listen to yours. I miss smiling with you when I tell you about my adventures and you tell me yours. I’ve been a part of the bleeding disorder […]
“Everyone can be great because everyone can serve.” — MLK Jr. “Service to others is the rent you pay for your room here on earth.” — Mohammed Ali Volunteering is gift. It can be the best things you’ll do — both for your community and you. For me, there are mental health benefits in getting […]
Un plato lleno de virus y un poco de brillantina es todo lo que se necesitĂ© para explicar a mis niñas la importancia de lavarse las manos. Cuando mis hijas eran pequeñas enfatizaba fielmente en la importancia de lavarme las manos con agua y jabĂłn. Teniendo en cuenta de que ellas tienen un trastorno […]
When I received Hemophilia Federation of America’s Infusing Love: A Mom’s Blog schedule back in January for this year’s blogs, I thought, “Ok I have plenty of time to think and write the best blog yet for me.” Wrong… As the months went on, the craziness with my boys’ school and extracurricular activities and sports, […]
Sometimes I feel that Maddox doesn’t even have hemophilia, because he’s such a wild man, and responds so well to his new medication. At first, we were so scared as a family to make the switch. Understanding that every family is different, we didn’t want to be swayed in the wrong direction. We have seen […]
Our children face difficult things in their life on a daily basis. We teach them, we guide them and then pray it all works out. When they are little, we can control situations and speak for them when we believe we know our children better than anyone in the ER. We are the MOM! We […]
The Infusing Mom bloggers have a set schedule on when articles are due each week. As my date drew near, I believed I had my topic. I had been scrolling through my Facebook feed and noticing pictures of kids whose parents had captured the fun they had that day. My kids are older, and […]
As bleeding disorder parents, we are planners. We love to know what, how and when something is headed our way, and we will be prepared. We have been disaster relief preparing since day one. We have hospital/ER bags ready to go at a moment’s notice. Even during this age of smart phones, we have […]
Saludos a todas las madres que, como yo, tienen en su vida y en sus corazones una persona muy especial que llena sus dĂas de felicidad. Les contarĂ© un poquito sobre mi vida. CrecĂ en una familia donde la hemofilia estaba en nuestro diario vivir. Esto me hizo ver la condiciĂłn como algo normal. Mi […]
I remember when Nick was much younger, we went to a meeting and one of the sessions was on transitioning from teen to adult. I remember thinking I didn’t need/want to go to that because we were nowhere near that time. I blinked and all of a sudden, we are at that time. And […]
There are times as a hemophilia parent where hemophilia is not at the forefront of your mind. Times where you can just live and enjoy every moment without worry. It’s almost as if hemophilia is a distant memory. You run on autopilot — not thinking, just doing.  \At these times hemophilia has absolutely no impact […]
Hola a todas las lindas mamas de este blog, mi nombre es Lupe Torres, vivo en la ciudad de Las Vegas, NV. Soy mamá de tres hermosos hijos. Tengo una hija de 23 años, un varĂłn de 24 y mi más pequeño de 18 años. Mi hija Michelle de 23 años fue diagnosticada con VWD […]
Even though I have never attended camp, and had no idea what it was all about, I did not want my son, my only child, to miss out on the experience. The first time Omar attended camp; he was just 7 years old. He looked so sad and didn’t want to stay, but we all […]
The English version of this Infusing Love: A Mom’s View blog can be found below. En Puerto rico se celebra el DĂa de AcciĂłn de Gracias (Thanksgiving) al igual que en los Estados Unidos continentales. La verdad es que todos los dĂas festivos federales se celebran, pero Ă©ste lo hemos “criollizado” en gran medida. […]
My son’s pediatric ophthalmologist tells a story about a little girl who was about 4 or 5 years old who came in for an eye appointment due to some concerns. It was determined the little girl had severe double vision. She was seeing double of almost every single object in her line of sight. The […]
My son, Jackson, is nearing his 12th birthday. For our family, hemophilia is genetic. so Jackson has been dealing with his diagnosis since birth. We’ve been very open about his bleeding disorder since he was little; sharing and educating our family, friends and teachers. We are fortunate in that he can feel a bleed before […]
Wow, it’s the end of the year and the end of a decade! I am not leaving this decade the way I began. My decade began with a 7-year-old son with severe hemophilia A, who I wouldn’t allow to play recreational sports. I was pregnant with twins, one being a boy, unsure if I was […]
Over the last several years, I have been focused on the idea of transition and independence as Thomas speeds through his adolescence. While he will always be my little boy, I simply have to face the facts that this six-foot, 16-year-old will be making decisions for himself and his healthcare in short order. There have […]
Tener una buena comunicaciĂłn con nuestros hijos e hijas no siempre es fácil. Para esto es imprescindible saber estilos adecuados de comunicaciĂłn para conocer a nuestros retoños más, para saber lo que piensan, para entenderlos más y para saber cĂłmo se sienten. De hecho, la comunicaciĂłn entre padres e hijos es esencial para fomentar […]
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