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Infusing Love: Blessed to Have Treatment

April 15, 2015

I sometimes forget how fortunate we are to live in the United States. When Max was younger, we had all the typical issues a child with hemophilia has: excessive bruising, bloody noses, and joint bleeds. I struggled to maintain health insurance, and as he aged, I struggled with navigating his infusions. As we attended more […]

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: Not “Just a Mom”

April 1, 2015

The candidates for the HFA Board of Directors Executive Committee were asked to record a short video to share rather than a written resume this year. I thought it was a great idea until I realized that I had to do it too.聽 I totally dragged my feet for a few weeks until I reached […]

Infusing Love: Gateway to Understanding

March 25, 2015

  For someone who spends her days organizing events for a living, it always surprises me how much I look forward to the HFA Symposium each year. It has a similar structure to many of the events I plan 鈥 with plenary sessions, workshops, exhibits, and networking events 鈥 yet it feels completely different. Yes, […]

Infusing Love: Thanks ABC!

March 18, 2015

Wow – what a difference a day makes!聽 Yesterday our community was outraged by a careless remark made on the ABC television drama, 鈥淪ecrets and Lies鈥 which aired on Sunday, March 15th.聽 I, along with thousands of others, voiced my concern in a variety of ways 鈥 social media, emails, and good old fashioned talking. […]

Infusing Love: Tough Questions to Answer

March 11, 2015

I was starting to get Ryan, my youngest, ready for bed while Logan hovered around us. Logan loves Ryan, and wants to be near him always. It is incredibly sweet. But on this particular day Logan was paying close attention to Ryan, and after a few moments Logan casually asked, 鈥淲hen does Baby Ryan get […]

Infusing Love: A True Black & Blue Sensation

March 4, 2015

While the rest of the world is debating whether a dress is black and blue or gold and white, one thing I know for certain is that my son, Thomas, has been black and blue many times over the last eleven years. Do you think the world understands why? You might remember HFA鈥檚 Hemophilia Awareness […]

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: Discipline, Divorce, & Dating

February 4, 2015

Oh February, the month of love for those who have someone, or the month of single awareness for those who don鈥檛.聽 I fall into the single category. I鈥檝e been reevaluating some things as to why I am single; reviewing the lessons I鈥檝e learned of being a single mom of a child with hemophilia. I鈥檓 45 […]

Infusing Love: Prepare for the Unexpected

January 28, 2015

I love reading my horoscope. 聽A recent one read, 鈥淐ome to grips today with financial issues that need your attention. Pay bills, go over accounts, and definitely make a budget.鈥 For those of us living with bleeding disorders, that budget should include paying medical bills you hadn鈥檛 bargained for. It鈥檚 important to be prepared for […]

Infusing Love: Do I Get Used to It?

January 21, 2015

I鈥檝e seen a recurring question in the bleeding disorders community a lot in the past few weeks:, 鈥淲ill I ever get used to sticking/poking my kid?鈥 The answer is yes and no. Think about it — there is nothing normal about sticking your child with an IV needle or accessing their port to infuse them […]

Infusing Love: Celebrations & A Heavy Heart

January 14, 2015

My son Caeleb has struggled with an inhibitor since he was 11 months old. Despite many doctors鈥 recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT).聽 He developed a rare allergy to factor VIII and there is no known treatment or protocol […]

Infusing Love: Hemophilia is the Easy Part

January 7, 2015

鈥淗emophilia is the easy part.鈥 I realized that both my son and I have said this recently.聽 There are many physical and emotional issues that we both face stemming from Max鈥檚 hemophilia, but the actual condition is not one of them. I鈥檒l say it again: 鈥淗emophilia is the easy part.鈥 I鈥檓 not even sure when […]

Infusing Love: We Are Stronger Together

December 10, 2014

In March 2014 I attended my first HFA conference, and for the first time in my new journey as a hemophilia mother I didn鈥檛 feel alone and left truly inspired.聽 Beyond encouragement, I also received education which helped me to accept my own diagnosis of hemophilia. For example, I met Julie, who told me about […]

Infusing Love: A Community’s Legacy

December 3, 2014

[glossary_exclude] This past Monday marked the 26th annual World AIDS Day.聽 James W. Bunn and Thomas Netter, two public information officers for the Global Programme on AIDS at the World Health Organization, conceived World AIDS Day in 1987. Since then, messages and proclamations that raise awareness and call for action for an AIDS-free generation are […]

Infusing Love: Gratitude List

November 26, 2014

What are you grateful for? If you鈥檙e like me, it varies somewhat day-to-day. We all probably have a standard 鈥渟et鈥 of items we鈥檙e grateful for 鈥 our family, friends, jobs, etc. But outside of those 鈥 it really can vary from one day to the next. Some days I鈥檓 grateful for my dog 鈥 he […]

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: Hope is More Than a Four Letter Word

October 29, 2014

“Hope is important because it can make the present moment most difficult to bear.聽 If we believe that tomorrow will be better, we can bear a hardship today.”聽 -Thich Nhat Hanh I have never been a big fan of awareness bracelets聽 — the kind that are made of rubber that have sayings and logos promoting […]

Infusing Love: A Place of Comfort

October 22, 2014

It鈥檚 that glorious time of year when pumpkin fever has taken over and everywhere you look is pumpkin this and pumpkin that.聽 Local farmers鈥 markets are overflowing with a fall harvest of crisp apples and colorful displays of squash and gourds.聽 Overindulging on warm apple cider donuts is accepted as a guilty pleasure, marking the […]

Infusing Love: Assessing the Risk

August 6, 2014

Risk plays a major factor in what activities we allow our children to take part in. From the moment they are born, we, as mothers, worry about their physical and mental safety, and do our best to guide them in the right direction. Risk helps us determine the limits and boundaries we create to keep […]

Infusing Love: Fear of the Unknown

July 30, 2014

Today, HFA is pleased to introduce new blogger, Kari. 聽Kari and her daughter have a rare bleeding disorder, Platelet Storage Pool Deficiency (PSPD). Continue reading as Kari introduces herself and shares more about her and her daughter’s diagnosis. Every morning when I wake up, the first thing that usually pops into my head is my […]

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 […]

M.O.M.

October 30, 2013

              Maryann May, M.O.M.:聽 Those are my credentials, M.O.M. I have been thinking about this for a while now. Over the past few years I have applied for jobs within our hemophilia community and it always seems that the person who gets the job has letters after their name. […]


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