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Infusing Love: A Letter to Hemophilia

January 27, 2016

Dear Hemophilia, There was a time when you devastated me. You destroyed my little boy鈥檚 knee and ankle, causing tremendous pain and forcing him to undergo several port surgeries. He missed weeks of school. Oh, and let’s not forget the wheelchair you put him in for over a year. That was torture, taking away his […]

Infusing Love: Normal is as Normal Does

January 20, 2016

Sometimes, as I wander around whatever hospital we鈥檙e in, I wonder what the difference in normal is between us and them: those living with a chronic condition and the people that do not. As they were wheeling Max into the operating room for yet another surgery, I wondered when this became our normal. Max and […]

Infusing Love: Summiting Mount Worry

January 13, 2016

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 […]

Infusing Love: Timeline of a January Bleed

January 6, 2016

Thomas has had his inhibitor for more than a decade, causing bleeds to be an unfortunate, but relatively routine, occurrence. We鈥檙e used to holiday bleeds, birthday bleeds, and random 鈥渨here did that come from鈥 bleeds. Be it crass or an obvious statement, bleeding happens, and we push forward. Through these tough times, we try to […]

Infusing Love: Realistic Expectations

December 31, 2015

There is nothing I love more than sitting around the Christmas tree with friends and family, sipping hot cocoa, singing holiday carols, and wearing a warm knit sweater with a reindeer on it. Ok, I admit it. I have never done any of those things, at least not all at the same time. I stole […]

Infusing Love: Wrapping Up The Imperfect

December 23, 2015

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. […]

Infusing Love: A Sweet Escape

December 16, 2015

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 […]

Infusing Love: Volunteers Make the World Go Round

December 9, 2015

With the holidays approaching and this year coming to a close, I have found myself reflecting on the little things I am most thankful for in this community. Micah and I are truly blessed and thankful to have the people and support we have found — all because he has hemophilia. Too often we get […]

Infusing Love: A World of Thanks

November 25, 2015

I was at the craft store the other day looking for Thanksgiving dessert plates and napkins; instead I found Christmas decorations from corner to corner. I asked a sales associate where I could find the fall or Thanksgiving related d茅cor. To my disappointment it had all been removed the day after Halloween. My quick retort […]

Infusing Love: With Gratitude

November 11, 2015

It’s said that everything happens for a reason. Someday you’ll look back on this and be thankful. You’ll be able to see what it’s taught you. When my daughter and I were first diagnosed with Platelet Storage Pool Disorder (PSPD), I had a hard time finding the good in anything amidst all the frightening doctor […]

Infusing Love: Losing Myself

November 4, 2015

  I love being a mom. Nothing makes me happier than cooking a great meal for my family, making soup to feed a cold, and even washing and folding their clothes.聽I am blessed to still pack lunches for one of my kids, while I watch my oldest one pack his own for his day at […]

HFA Receives Donation of VeinViewer Flex

November 4, 2015

Christie Medical Holdings Inc., a global leader in portable vein imaging systems to aid in venipuncture procedures, has donated a VeinViewer庐 Flex to the Hemophilia Federation of America (HFA) as part of the Christie CARES philanthropy program. Based in Washington, D.C., the Hemophilia Federation of America serves as a consumer advocate for safe, affordable and […]

Infusing Love: Hemo Hacks

October 29, 2015

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or […]

Infusing Love: He鈥檒l Do It When He鈥檚 Ready

October 14, 2015

Nick and his classmates were talking about different health disorders in his health class, and one of his friends disclosed to Nick that he had ADD. Nick replied, 鈥淲ell, I have hemophilia.鈥 That was the first and only time Nick divulged his hemophilia diagnosis to a friend. I have to admit that this bothers me, […]

Infusing Love: Where Did The Time Go?

October 7, 2015

I looked at Thomas a couple of weeks ago and wondered, 鈥淲hat happened to my little boy and when did he become a tween?鈥 It seems like it was just yesterday that I received the diagnosis of his severe hemophilia. The memories are still fresh in my mind of those first bleeds and infusions, and […]

Infusing Love: A Painful Legacy

October 1, 2015

  I attended my first, big, national hemophilia conference in 1997. My son, Julian, was 2 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 […]

Infusing Love: It鈥檚 Like Riding A Bike

September 23, 2015

I鈥檇 like to make something very clear: I鈥檓 not one of those people who wake up in the morning dying to go for a bike ride! It鈥檚 more of a sigh, I guess I should go ride my bike鈥 I first heard about Gears for Good from my friend, Diane. She told me about a […]

Infusing Love: Girls Bleed Too

September 16, 2015

If I had a nickel for every time someone asked me whether I was sure my daughter had hemophilia, well I wouldn鈥檛 be rich, but I would certainly have a heavy load of change tearing a hole through my pocket. Before my children were diagnosed, my only exposure to hemophilia was in my college genetics […]

Infusing Love: Speed Bumps Along the Road to Independence

September 9, 2015

We are still on the road to self-infusion, and it鈥檚 been a long-term journey to his independence.聽 Benny, my 13-year-old who has severe hemophilia is stressed about doing his own needle stick. He is a particularly anxious kid and determinedly marches to his own beat, so letting him infuse at his own pace is the […]

Dear Addy: Back to School 2015

September 4, 2015

Dear Addy, My daughter is about to start kindergarten. How should I go about telling the teachers and administrators at her school about her hemophilia?聽 I want them to know how best to respond to any incidents without treating her like a Faberge egg. Signed, Off to School鈥擭ow What?! Dear Off to School, Sending a […]

Infusing Love: Factoring in the Freak Out

September 2, 2015

It is a common refrain to hear medical professionals comment on how well Logan does with his infusions. This is usually echoed in a, 鈥淗e is such a champ,鈥 or 鈥淗ow did you get to be so brave,鈥 or the sadder version, 鈥淚 wish my older patients were this good.鈥 I am proud of Logan; […]

Living with Hemophilia: A Young Adult Perspective

August 31, 2015

The transition to adulthood is an exciting time for any聽young adult, and can include living on their own for the first time, beginning a job, or starting a college/higher education experience. However, this also means young adults must learn quickly how to juggle the inevitable increase of personal responsibility. Dakota, age 20, is a PharmD […]

Infusing Love: An A+ for Educating the Educator

August 26, 2015

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 […]

Infusing Love: Her Own Protector

August 19, 2015

The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I […]

Infusing Love: It Takes A Village

August 12, 2015

My husband, Alan, and I often get asked, “How did you raise a child with hemophilia who is attempting to climb the highest mountain on every continent?”聽 Most of the time we shake our heads and answer, “We have no idea.” Alan and I have two sons.聽 Our oldest, Andy, does not have hemophilia, and […]

Infusing Love: Lessons Learned

August 5, 2015

Micah will be 14 years old in just a couple of months. He has severe hemophilia A, no inhibitors, and has been on prophylaxis since he was just over a year and a half old. So, for roughly twelve years, he has been on a very strict prophylaxis schedule dosing three or four times a […]

Infusing Love: Camp Forget-Me-Nots

July 29, 2015

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 […]

Infusing Love: You Can Do Anything (With Guidance)

July 22, 2015

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to keep them flexible and strong.聽 Physical activity also helps individuals to maintain a healthy weight, which keeps less stress off the joints, and has even proven to […]

Infusing Love: Mom Interrupted

July 15, 2015

I am finding myself in an interesting point in my life.聽 My oldest son is home for the summer and has finished up his first year of college. My youngest son is about to start his senior year of high school. So I鈥檝e successfully launched one bird out of the nest and hope I can […]

Infusing Love: Towards the Light or the Shadow?

July 8, 2015

When you are in the middle of what seems like a never-ending bleed, you function in the moment, hoping that things get better soon. Living with a chronic condition has helped my family learn to look at things in a positive light, and I like to think it has helped me become someone who sees […]


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