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Mom’s Blog: Infusing Love

Infusing Love: We Are Family

March 1, 2017

  Since my son Thomas was born thirteen years ago, I’ve come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]

Infusing Love: Laugh or Cry

February 23, 2017

Anyone who knows me or has read any of my previous blogs, knows that our household basically revolves around baseball. If the weather is nice and I’m not at work, I’m at the baseball field. Sometimes it makes life a little crazy, but it makes Nick really happy and that is what’s most important. My […]

Infusing Love: Six Lessons Learned

February 15, 2017

  A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip […]

Infusing Love: The Right Time

February 8, 2017

  There is this one conversation I’ve had repeatedly with dozens of parents over the past ten years. It always revolves around our desire to be protective and shelter our kids. A child’s early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be […]

Infusing Love: Bleeds Hurt

February 1, 2017

  A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go […]

Infusing Love: I’ll Be Ready

January 25, 2017

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

Infusing Love: Now What?

January 18, 2017

  This week the Infusing Love Mom’s Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and […]

Infusing Love: Single But Not Alone

January 11, 2017

Being a single parent is challenging for anyone. Being the single parent of a child with a severe, costly chronic illness comes with its own set of issues. I remember the times that Max unable to attend events that were geared toward fathers and sons. I once called our chapter office when Max was around […]

Infusing Love: Smells and Sounds

January 4, 2017

The senses of sound and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]

Infusing Love: Naughty or Nice – It’s a Choice

December 28, 2016

One of my co-workers often uses the phrase unconscious incompetence. It essentially means you just don’t know what you don’t know. The recent election surprised many. I’ll stay away from the politics but I can’t help but reflect on the flippant comments made by a constitutional law professor post-election who referred to those who were […]

Infusing Love: Growing Up So Fast

December 14, 2016

  This week’s Infusing Love entry is a poem co-written by our longtime blogger, Kari, and her daughter, Scarlett. I’m learning to be safer, watch my step, and stay out of harms way. Each day a new lesson, on how to exercise and how to play! I might start off feeling intimidated, scared or shy. […]

Infusing Love: Taking a Stand

December 7, 2016

  Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency […]

Infusing Love: A Boy & His Dog

November 30, 2016

Thomas had a stuffed animal when he was little. “Dog*” went through a lot with us. He was a constant companion, friend and source of comfort. Dog stayed in the hospital, went to clinic visits and traveled with us. We would literally pack factor for an ER visit with one hand and grab Dog with […]

Infusing Love: He Needed Me

November 23, 2016

I am exhausted. So very exhausted. I am pleading to myself that there isn’t something wrong; that the whimpers and small cries I hear as he sleeps aren’t there and that it is from sleep deprivation. I am drifting in and out of sleep on the baby glider that still graces his room even though […]

Infusing Love: Finding His Voice

November 9, 2016

    Recently a friend shared a quote that really resonated with me: “A negative mind will never give you a positive life.” I recited that quote at least one hundred times the day she shared it. I even had to find a pretty Google image of the quote, print it off, and hang it […]

Infusing Love: Sisterly Bond

October 26, 2016

I adore the “On This Day” feature on Facebook. It is a wonderful way to look back at the past to see what has happened on any given day in past years. It often reminds me of those moments that may have slipped my mind in a blur of parenting madness over the last fifteen […]

Infusing Love: Stealing My Joy? Never!

October 19, 2016

  For over a year my family has lived like most everyone else in the world.  We get up, go to work and school, have fun, go on trips, eat and play….it’s all very good.  Our oldest son has gone away to college and our youngest is in the fifth grade. The blessing has been […]

Infusing Love: Normal Is as Normal Does

October 12, 2016

As I have become more involved in the hemophilia community over the last few years, and read more stories online, it is evident that each person with hemophilia and the people caring for them have such different experiences with bleeds and treatments. When Chris was young, we were told Chris wasn’t your “typical” child with […]

Infusing Love: Respecting Our Elders

October 5, 2016

I have been thinking a lot about my role in my bleeding disorder community as Max becomes an adult. Where is my place as a mom of an adult son with hemophilia? I have been given the gift of having a job that keeps me connected and involved, but what about the other old timers? […]

Infusing Love: Growing Our Family

September 28, 2016

Time moves so quickly. As adults we blink and a year has passed. As kids, we couldn’t wait to be adults. I feel like it was just yesterday that we were adjusting to life with one itty-bitty baby, with a chronic condition. Now we are in a routine, his disorder is well managed, and he […]

Infusing Love: Aprendiendo a vivir con un nuevo diagnóstic

September 21, 2016

von Willebrand Disease… ¿Qué es eso? ¿Qué clase de enfermedad tienen mis hijas? ¿Es contagioso? ¿Qué le puede pasar? Esta y muchísimas preguntas más fueron las que nos hicimos el día en que la pediatra en Albany, Nueva York, diagnosticó nuestra hija menor, Juliemar, 8 años a este momento, con von Willebrand Disease (vWd), tipo […]

Infusing Love: No (Wo)Man’s Land

September 14, 2016

My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn’t particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]

Infusing Love: A Mom Intervention

September 7, 2016

Benny starts high school this week. How did that happen? When I started working at HFA he was in kindergarten. I remember being amazed at his astounding ability to put 100 piece puzzles together at 5 years old and spend hours building things with Legos. At the start of second grade, despite untold hours trying, […]

Infusing Love: Thank You to Our Teachers

August 31, 2016

Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]

Infusing Love: A Picture is Worth a Thousand Words

August 17, 2016

I was cleaning out my closet recently and found an old picture of Nick stuffed in the pocket of a purse. My first thought was, “Man, he was a cute baby.” My second thought was, “That was right before he had a spontaneous epidural bleed.” Nick was eleven months old, in daycare, and not walking […]

Infusing Love: Speaking Pokémon

August 10, 2016

Thirteen years ago, I had to learn a new language. Like any new language learning, it began with learning how to spell. Our day-old son was cradled in my arms when the phone rang in my hospital room. Thomas had been bleeding from his circumcision site since the day before, but I honestly wasn’t overly […]

Infusing Love: Careful What You Say

August 3, 2016

I had a “Hemo Mom” moment of synchronicity earlier this summer. In my last Infusing Love post, “Superheroes Need Rest Too,” I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four  -month-old twin siblings. Marques eventually […]

Infusing Love: Defining Normal

July 26, 2016

“How do you do it?” “Isn’t it difficult?” “Do you feel as though you need to wrap him in bubble wrap?” “How do you handle all of it?” Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

Infusing Love: It’s About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.  He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

Infusing Love: Away He Goes

July 13, 2016

During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]


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