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Mom’s Blog: Infusing Love

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; […]

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 […]

Infusing Love: Making New Memories

July 1, 2015

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 […]

Infusing Love: Thankful for Hemophilia

June 24, 2015

As a parent of a child with hemophilia, it is quite often difficult to find something about hemophilia for which you are thankful. Let鈥檚 be honest, for all of us, at times, it can be difficult to sing the praises of hemophilia. Thankfully, there are also days that you realize the multitude of unexpected blessings. […]

My Dad: As Seen By A Hemo Mom & Daughter

June 21, 2015

    I wish I could run on the beach with my Dad. This thought went through my mind as I watched a father and daughter on the beach a few weeks ago.聽 As I watched the dad and daughter run into the distance, I started to feel sad. I never saw my dad run.聽 […]

Infusing Love: Friends to the Rescue

June 18, 2015

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 […]

Infusing Love: Wouldn鈥檛 Have Him Any Other Way

June 10, 2015

When my daughter, Ashley, and her husband announced their pregnancy it was one of the happiest days of my life. On the day of Landon’s birth, I was so excited and could not wait to hold that little bundle of joy in my arms. After a very long day and night, Landon finally arrived into […]

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: Finding Our Way

May 27, 2015

Families come in all shapes and sizes and it鈥檚 no surprise that those will special needs face a unique set of challenges. Raising my twin daughters while balancing the demands of various medical, neurological, and learning differences thrust me in to a endless game of special needs roulette. Predicting the outcome is impossible.聽 Each of […]

Infusing Love: Physical Fundraising

May 20, 2015

This is becoming one of my favorite times of the year to be a bleeding disorders advocate. It鈥檚 the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country. In 2011, HFA hosted its first annual Gears for […]

Infusing Love: A Balancing Act

May 13, 2015

When I am toting around my two preschool aged boys to kids activities or the store, I typically get the comment, 鈥淵ou have your hands full.鈥澛 I reply with a smile in agreement, but in my mind I respond, 鈥淚f you only knew.鈥澛 Recently when someone opened heavy doors for me as I struggled with […]

Infusing Love: My Mom, The Super Hero

May 10, 2015

As a hemophiliac there are many things I am grateful for that most “normal” kids just don’t get like the amazing bonds with my blood brothers and their families during conferences and at camp. However, what I am by far most grateful for is my mother. After dealing with all the challenges related to hemophilia, […]

Infusing Love: Staying Connected

May 6, 2015

I was recently asked about being a single mom and, more specifically, whom I consider my support system.聽 I have no family living in the state of Mississippi with me.聽 My closest family members are actually four hours away.聽 I鈥檝e been here a couple years now, and my son Micah and I just love this […]

Infusing Love: Real Progress on the Road to Independence

April 29, 2015

Note: This is part two of a three part series. Click HERE to read part one. Although my Benny is still not self-infusing, the last few months have been a positive journey for us! As noted in my last blog, my 12-year-old has been extremely anxious and stressed about doing his own needle stick. We […]

Infusing Love: An Advocacy Choir

April 22, 2015

Earlier this month, Jackson and I attended the Ohio Statehouse Days hosted by the Ohio Bleeding Disorder Council. This was a time for families and individuals with bleeding disorders to meet with their senators and representatives to talk about issues and legislation that is vital to our community. This is the third year that we […]

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 […]


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