Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
I adore the 鈥淥n This Day鈥 feature on Facebook. It is a wonderful way to look back at the past to see what has happened on any given day in past years. It often reminds me of those moments that may have slipped my mind in a blur of parenting madness over the last fifteen […]
Ask for help! It seems easy to do, but it takes a lot of effort. If someone would have told me, as a hemo mom, 鈥淵ou need to ask for help!鈥滻 could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]
Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]
Until recently my husband and I didn鈥檛 realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn鈥檛 have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]
I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children鈥檚 feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan鈥檚 sweet personality, but […]
Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children鈥檚 Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]
Does anyone really like getting stuck with needles?聽 I don鈥檛 and I only gets labs drawn yearly and have my flu shot once a year.聽 When you have hemophilia and you have serious needle phobia, infusions don鈥檛 go well.聽 My son Chris, who is now 30, admits he still has severe needle phobia. Chris鈥檚 first […]
We鈥檝e all read those statistics that discuss the cost of raising a child. Most I鈥檝e seen report the costs in the $250,000 range. Kids are expensive. Just recently, at Target, our cart contained a variety of things that were not on my list and, of course, I had to actively tell my 4-year-old that he […]
For those of us with children who have their own cell phones, how many times a day do you say, 鈥淕et off the phone!鈥 or 鈥淧ut the phone down!鈥? But I challenge you to think about yourself: How many things are you doing right now? Other than reading this blog 鈥 one, two, three more […]
I was recently talking with someone about Chris鈥檚 Seven Summit Quest, and the woman I was talking to said something that I didn鈥檛 understand. She said she was glad we raised Chris to not be a victim of his hemophilia. I asked her what she meant by that. She said so often people use medical […]
Christmas is just a few days away. If any of you are like me, you are wondering where the year has gone. At work, clients want all their matters wrapped up and at home I need all my presents wrapped up!! You鈥檝e probably heard the Walgreens commercial 鈥 on the corner of happy and healthy. […]
Life will almost always be unpredictable; it鈥檚 just part of the experience of being human. You can do your best to try and control how things will turn out, but even with precise planning and micromanaging, we all have to face disappointments and adjust our sails along the way. Accepting this and gaining new perspectives […]
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 […]
I attended my first, big, national hemophilia conference in 1997.聽 My son, Julian, was two years old and I was scared to death. The enormity of it was almost too much!聽 The exhibit hall with giveaway after giveaway (I had no idea that my son was seen as a dollar sign to some ), huge […]
Like all parents, I spend a few hours each August filling out back to school paperwork. It鈥檚 a tedious task. Once I finish all the required forms: emergency contact, acceptable technology use, and parent-teacher organization forms, I begin tackling the hemophilia forms. I update Thomas鈥檚 Individual Health Plan (IHP), and his 鈥淢y Bleeding Disorder鈥 document […]
鈥淚 don鈥檛 have a bleeding disorder,鈥 said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). 鈥淚 know you don鈥檛 have a bleeding disorder, but they are allowing siblings to attend.聽 […]
There are many dates and events in our lives that we think of as markers: birthdays, anniversaries, graduations, and holidays. For some it鈥檚 buying their first car or even a home. Sometimes they are things like the death of a loved one or loss of a job. We have memorabilia such as pictures, diplomas, obituaries […]
We had a tough winter. We spent more time than ever before cuddled up in an ER room watching whatever Disney movie was on the in-hospital. Doctors and nurses would rush in and out. We ate fast food and hospital food.. We coped. Because, this is our life. This is our reality. We have a […]
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 […]
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 […]
Often times I am talking with other moms and the conversation comes up about how tired we are or how we find it difficult to make time for ourselves. As caregivers, we are constantly doing for others. We are making meals, help with homework, running errands, or being a taxi for our kids. Being a […]
I don鈥檛 think I鈥檒l ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with聽Platelet Storage Pool Disorder (PSPD). It was 10:30 AM on a聽Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that […]
I grew up knowing the word hemophilia, although as a child, I could not have told you what it exactly meant. I knew that some of the boys in my family bled a lot, but nothing about the different severities or types.聽 I knew that my Granddaddy was a bleeder and that he died when […]
[glossary_exclude] This week is the 4th annual HFA Gears for Good bike ride, which means it鈥檚 also been one year since I did my first Gears for Good ride in DC.聽 As I look back on those three days, I鈥檓 flooded with many different emotions. I am not a cyclist.聽 When the ride was about […]
Today is a day for celebrating grandparents, our experienced mentors in this journey of parenting.聽 Our Infusing Love mom bloggers share what their parents or grandparents have meant to them and how they’ve offered support when times get tough living with a bleeding disorder.聽 ________________________ Growing up, celebrating Grandparents Day was just as big as […]
One of the positive things about hemophilia is the different sports and hobbies it has reintroduced into our family life. When Micah was three, we attended our first hemophilia fundraiser.聽 It was at a bowling alley.聽 He absolutely loved it and thought it was funny when the pins fell down and everyone clapped. 聽He loved […]
When my newborn baby was put into the Neonatal Intensive Care Unit (NICU) for a week, I was hit by a powerful force of immense strength and love I didn鈥檛 know I had.聽 聽My husband and I already were blessed with our firstborn son who did not have any health concerns.聽 While we love both […]
Our Back to School toolkit was created for parents of children with a bleeding disorder. Check it out for examples of IHP, 504 & IEP plans, and a customizable PowerPoint presentation to help you advocate for your child:聽/?p=17892 In a week my oldest son, Marques, will start middle school and I can鈥檛 help but to […]
Some things can be measured: flour for cookies, a yard of material, an evaluation at work, and the number of times a heart beats, but what about pain?聽 When your child is in the hospital and is in pain the clinicians will often ask 鈥淲hat number is your pain?鈥 or 鈥淲hich face is your […]
We have all heard the clich茅s about needing a manual for parenting but one doesn鈥檛 exist. Parenting is hard, exhausting work. Hemophilia parenting is a whole other dimension; one that vaguely looks so surreal that it cannot possibly be the way we live. I remember the doctors, nurses and other HTC staff members loading us […]
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