Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
My dad taught me how to box and dance salsa; with these two skills鈥攕alsa and boxing鈥擨 learned how to defend myself and to never give up. I learned to always take notes on movements and to dance my way to resilience. Have you ever had the biggest hiccup that you just couldn鈥檛 get rid of? […]
I never thought this day would come鈥. When Myles was first diagnosed with hemophilia A, I knew we had a long road ahead of us. Doctor appointments and worrying about safety both inside and outside of school, could always be scary. However, the scariest was the responsibility of making sure Myles always had the correct […]
Bullying has no shame. It shows no prejudice. Bullying affects anyone of any size, age, and ethnicity.聽 It affects all of us. When I watch grown people intentionally hurt each other with words and actions, it always surprises me. One day I asked a young lady why she was making fun of her coworker. […]
October is National Bullying Prevention Month. For older moms, we think of bullying happening at school and after school in the neighborhood. But the unfortunate reality is that there is now the addition of bullying at home through social media and texts.聽 Historically, many have referred to bullying as a 鈥渃hildhood rite of passage.鈥 […]
My mother was called a 鈥渂leeder鈥 when I was growing up. I remember she almost died from a hemorrhage after surgery and her nose constantly needed to be packed at the emergency room due to nose bleeds. I never bled like her and never considered I might have something too. I went 36 years […]
One night I was cooking tacos for dinner. I was browning the beef and preparing to add the seasoning for the 10-minute simmer. I went to get the taco season package and the soft taco wraps out the pantry, when I realized I didn鈥檛 buy the soft taco wraps! There is nothing worse than realizing […]
Back in February Maddox鈥檚 provider suggested we try a new medicine. This medicine would allow him to be poked subcutaneously once a week, and with no need of factor replacement unless there is an emergency. After about six months on the new medication, we went in for Maddox鈥檚 yearly appointment, and removing his port […]
Omar was born in New Jersey, weighing close to 10 pounds. His second day at the hospital, I received the news of his hemophilia diagnosis. Initially, I felt isolated and alone and I did not know where to begin my search for information, assistance, understanding, and support. Despite that I had some knowledge because […]
Winter weather has always raised my hemophilia mom radar. Icy sidewalks make me very nervous and I鈥檝e yelled out, 鈥淚ce ahead,鈥 many times over the last 15 years in warning to Thomas. But as we all know, we can鈥檛 be with our kids all day, every day and accidents are bound to happen. […]
Our son, Michael, recently surprised us with the news that he was going to get a tattoo! I know, I know, he is 26 years old and can make his own decisions.聽But he still has severe hemophilia B with inhibitors. I got that knot in my stomach that all moms get 鈥 it鈥檚 a […]
I have to admit this blog gave me extreme anxiety about writing.聽Not in the respect that my father (Thomas Gibson), my husband (Alan) nor my father-in-law (James Hooper) are horrible fathers. It鈥檚 just very difficult to express my absolute gratitude to these individuals.聽These three fathers and grandfathers play such an important and vital role both […]
This blog is translated in English below. Este pasado d铆a de las madres celebr茅 mi a帽o n煤mero 23 de ser madre. 隆No s茅 ni como esto pas贸 tan r谩pido! En una pesta帽ar de ojos mis hijas han crecido y se han independizado, pero soy una mam谩 muy feliz. Criar a hijas involucra mucho tiempo […]
If you鈥檝e ever attended HFA鈥檚 Symposium, you probably know that the mom鈥檚 rap session is usually one of the most popular sessions and quite often has the most profound conversations. If you haven鈥檛 been 鈥 a mom鈥檚 rap session is just that 鈥 a chance for moms to sit around the room and talk about […]
Most that know me will tell you I do everything for my kiddos. That I spoil them. That I鈥檓 always driving them to after school activities or going to the park, for walks, bike rides, etc. I rarely say no and let them try whatever sports and activities they want to do. I spend […]
This past month we had the fight of our lives. My employee insurance runs February through January and my employer offered a new insurance plan this year. Much to our dismay, the insurance would not cover my son鈥檚 factor medication. Our insurance wanted our son to fail on three out of four factor products […]
Life is full seasons, parenting is full of seasons, and most importantly raising a child with a bleeding disorder is full of seasons. Most often when I look back over the seasons the most obvious of seasons are that of survival, like getting from one day to the next or one walking through a […]
Parent teacher conferences are synonymous with an interrogation, grilling or even a public debate. I spent about 12 years being on the other side of that debate. I was the one calling the shots, telling parents what their children鈥檚 strengths and weaknesses were academically, socially and behaviorally. I was comfortable having the tough conversations […]
It was 2002 when I married Harry, my high school sweetheart. Even then, I never discussed my dad with him because I had to keep my promise. I promised my dad who passed away when I was only 16 to never talk about hemophilia, AIDS, none of it. Harry put the pieces together though, […]
Caregiving is hard! Did I just state the obvious? I recently saw yet another article about caregivers, caregiver stress, caregiver burn out and the importance of self-care. You know, we鈥檝e all seen them. If you鈥檙e like me you may even roll your eyes when you think there are some people that need to be told […]
鈥淎 Drop of Blood鈥 Educating our Children 鈥淪ometimes I cut my finger, Sometimes I scrape my knee, Sometimes a drop or two of blood Comes dripping out of me. That means I lose some platelets, Some white cells and some red; I lose them by the millions In every drop I shed. But I don鈥檛 […]
When Thomas was much younger, we spent a lot of time in the hospital and as all moms know, keeping a toddler entertained for hours is challenging. I don鈥檛 think of him or myself as ancient, but this was pre-tablet days; I would actually haul a portable DVD player and a boxed set of Spiderman […]
My boys went back to school聽this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth聽grade. The first week of school is exhausting, overwhelming, and frustrating.聽It won’t be a picnic for a child with a bleeding disorder and a […]
In our family, we are open to participating in research, thinking, 鈥渋f it can help our kids or help a future family or patient then we are all for it.鈥 So when the opportunity arose to be enrolled in a trail to test long lasting factor, we jumped on it. We did our homework and […]
Have you ever signed up for something you felt you were not quite qualified for, but went ahead and did it anyway? I have, and I鈥檓 preparing to do it again.鈥 Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.聽 For most of my life, I […]
I am a true believer in the saying, 鈥渒nowledge is power.鈥 However, I also believe that the knowledge you attain must come from the correct source and at the right time. I have learned that this is even more true when it comes to hemophilia and motherhood. It […]
His name was Adam. And when I met him, I let out a huge sigh of relief. He was rather good-looking, and he seemed smart, strong, capable and perhaps most importantly, healthy. (Before you jump to any conclusions, this wasn鈥檛 a blind date.) My friend Carrie had introduced me to Adam. They shared a ski […]
My non-hemophilia mom friends have often say to me, 鈥淚 just don’t know how you do it. I just can’t imagine raising a child with hemophilia.鈥 I normally reply with, “my son with hemophilia is my baby, and I’ll do anything for him.” Earlier this summer, this very conversation played out between myself and HFA […]
Flip the calendar back to June 2010. It was a typical hot Virginia weekend and the baseball season was in full swing. I was in the stands as a proud parent and my husband was on the field as an assistant coach. Our son, Nicholas, 7 years old at the time, had made his first […]
When I think of summer I am reminded of my childhood spent outside playing with my friends. We’d run barefoot in grass or hang out at the pool. Sometimes I long for those days and what I realize that I miss the most is the companionship of my friends. Being a mommy is isolating sometimes, […]
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