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Mom’s Blog: Infusing Love

Infusing Love: We Keep on Ticking

April 6, 2016

My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance.聽My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]

Infusing Love: Family Ties

March 23, 2016

I鈥檓 adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn鈥檛 know about hemophilia. When I met her about ten years ago I found out that I have five younger siblings. Two of my brothers, Edwin and Steven, had hemophilia and died from HIV contracted in the […]

Infusing Love: Overcoming Obstacles

March 16, 2016

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 […]

Infusing Love: A Double Edged Sword

March 9, 2016

There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren鈥檛 fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there鈥檚 no simple answer to the question. 鈥淗ow鈥檚 Thomas doing?鈥 It鈥檚 double-edged sword. It鈥檚 almost impossible for me to […]

Infusing Love: Too Long to Wait

March 3, 2016

Our insurance provider changed at the beginning of this year.* We knew there would likely be some new hoops and apprehensively were preparing in the months prior to Jan. 1.聽 Thinking I was a savvy bleeding disorders mom getting ahead of a game, I knew this may require some extra work. So first thing on […]

Infusing Love: The Costs of Bleeding Disorders

February 24, 2016

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 […]

Infusing Love: Unplugged

February 17, 2016

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 […]

Infusing Love: Second Guessing

February 10, 2016

I deal with mommy guilt every time Jackson has a bleed. When my son is having a bleed, he tells me before there is any visible signs off swelling. I never doubt when he tells me鈥e knows his body. Two weeks ago, we got a dreaded call from the school health aide letting us know […]

Infusing Love: For the Love of Basketball

February 3, 2016

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: 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: Put Mom First!

November 18, 2015

I have a confession: I am a better talker than doer! Last November I wrote about self-care: 鈥淪elf-care should not only be what we teach our children with a bleeding disorder.聽 We have to practice self-care for ourselves.聽 Our children learn more from watching us anyway.聽 If they see us taking the time to care […]

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 […]

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: A Long Lasting Opportunity

October 22, 2015

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 […]

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.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 […]

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 […]

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; […]


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