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Infusing Love: Like Mother, Like Son, Like Daughter

June 3, 2015

After my son Thomas was born with severe hemophilia, and subsequently finding out that I have mild hemophilia, my husband and I had a conversation about adding to our family. For us, it wasn鈥檛 a particularly hard conversation; we knew we were rolling the genetic dice, but we were comfortable with whatever DNA combination our […]

Infusing Love: The Brother I Never Knew

April 8, 2015

I have always felt my brother’s presence in my life.聽 He was born in May of 1962.聽 There are no pictures of him or any stories about him.聽 He only lived for five days.聽 I was born, 6 years later, in October of 1968. I remember going to the cemetery to visit the family graves […]

Infusing Love: An Unexpected Haven

February 18, 2015

I鈥檇 be lying if I said my nerves weren’t through the roof upon entering the gates to the Taylor Family Foundation鈥檚 Camp Arroyo. To say that going to a family camp took me out of my element would be an understatement. I had no idea what I was getting myself into or what to expect. […]

Infusing Love: A Mother’s Bleeding Love

February 11, 2015

A mother鈥檚 love is constant and unending.聽 As mothers, we love each of our children unconditionally. Just because I have one son with a bleeding disorder and another one without, doesn鈥檛 result in any more or less love for either of my boys.聽 However, I do think having a son with a serious medical condition […]

Infusing Love: Following My Own Example

November 5, 2014

As hemo moms, we are the best when teaching others about self-care, but can be the worst at taking care of ourselves. Quick question — When was your child鈥檚 last doctor鈥檚 appointment and when is the next one scheduled? Now ask those same two questions of yourself. For most of us, we can鈥檛 quickly answer […]

Infusing Love: Outside the Comfort Zone

September 24, 2014

[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 […]

Infusing Love: Factor Where?!?!

July 2, 2014

I鈥檝e given factor in the back of a moving car, at the beach while on vacation, and even in a tent while camping.聽 When most parents start learning to give factor, they learn at their kitchen table, or at the Hemophilia Treatment Center (HTC).聽 Like most parents, a nurse began giving my son his factor […]

Infusing Love: Identical in My Heart

June 11, 2014

I hear the term 鈥淣ature vs. Nurture鈥 often and sometimes hear about studies or watch TV specials with identical twins switched at birth and how alike they still are.聽 Their temperaments, likes and dislikes, even their career paths surprisingly often fall into similar categories. That鈥檚 not the case with my twin daughters. Even during pregnancy […]

Infusing Love: The Hard Facts About Factor

June 4, 2014

Although it is fact that my son, Christian, has severe hemophilia, and a fact that we had no family history, the treatment for his condition is not as simple a fact. 聽I appreciate my ability to have a choice and voice in his treatment options, but sometimes I feel even more fear that I will […]

Infusing Love: His Turn to Choose

May 28, 2014

My baby with hemophilia just turned 12. I think about how lovely it could be to keep him a snuggly little boy forever, but it just isn鈥檛 going to happen. He鈥檚 growing up and he鈥檚 his own person. As a family, we鈥檝e discussed a fair bit about how your body is your own. With my […]

Infusing Love: You Know You’re a Hemo Mom When…

May 11, 2014

Everyone finds coping mechanisms to get through stressful situations. Moms quite often bear the brunt of the stress as caregivers, and many moms of children with bleeding disorders find humor, and especially sarcastic humor, to be a helpful way to deal with the day-to-day issues of hemophilia or other bleeding disorders. They see the irony […]

Infusing Love: Patience for the Patient

May 7, 2014

I am a terrible patient. I only realized this about myself within the last few months. I have personally used the medical system on a very minimal basis and have never engaged an emergency room or specialists in any of my own care. I do my yearly wellness check and I get out the door […]

Infusing Love: A Bird’s Eye View

April 30, 2014

I don’t think most people would say that they like to be stuck with needles on a regular basis. I have heard stories of big, manly, tattooed men on the brink of tears when a needle approaches, but those of us with children who have a bleeding disorder know that we have some of the […]

Infusing Love: I’m Not Bossy. I’m a Hemo Mom

April 23, 2014

You may have seen the new campaign, “Ban Bossy” that features Beyonce, Michelle Obama, Sheryl Sanberg and other prominent female figures. This campaign is focused on encouraging girls to be confident leaders, while discouraging labels such as bossy, aggressive, angry, or one of the many other commonly used epithets. I think we as Hemo Moms […]

Infusing Love: The Union Behind My Reunion

April 16, 2014

The thing about kids is that they grow up 聽they move on and make their own choices. That鈥檚 what Max did 鈥 he moved on and made his own choices. That鈥檚 not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent […]

Infusing Love: Hug O’ War

April 9, 2014

I grew up an only child raised by my grandparents, so I never had the sibling experience of arguing and fighting with another child in the house.聽 As a mom, that battle between siblings and the idea of sibling rivalry has been a foreign concept to me.聽 Sure, there were periods of my life when […]

Infusing Love: Pass to Play

April 2, 2014

Thomas recently had a project at school that required group work over a few weekends.聽 Another mom in the group offered to host the boys (for which I was grateful 鈥 I didn鈥檛 particularly want a group of five 5th grade boys in my house for several hours over the weekend.) At the time, Thomas […]

Juggling In the Hemophilia Circus

March 12, 2014

Multitasking is a way of life in today鈥檚 world.聽 We watch television while cooking dinner and simultaneously helping our children with homework.聽 We reply to email while having several windows on our computer open, all while our cell phone is glued to our ear.聽 When you live with a bleeding disorder you master the art […]

Right Here, Right Now

February 26, 2014

ad路vo路ca路cy noun \藞ad-v蓹-k蓹-s膿 : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]

Girls Have Hemophilia, Too!

January 7, 2014

My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]

Taking Care of Me

May 22, 2013

Denial is a funny thing. There were several signs that indicated I needed to take some action about changing my habits and improving my overall health. 聽I chose to ignore most of those signs, giving myself excuse after excuse: I just don’t have time to exercise; there was a vegetable on my plate at dinner, […]

Siblings: Unaffected, but certainly AFFECTED

March 13, 2013

  As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. 聽The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. 聽But […]


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