Infusing Love: An Undeniable Connection

If you’ve ever attended HFA’s Symposium, you probably know that the mom’s rap session is usually one of the most popular sessions and quite often has the most profound conversations. If you haven’t been – a mom’s rap session is just that – a chance for moms to sit around the room and talk about […]

Infusing Love: The Ideal Mother’s Day

  Most that know me will tell you I do everything for my kiddos. That I spoil them. That I’m always driving them to after school activities or going to the park, for walks, bike rides, etc. I rarely say no and let them try whatever sports and activities they want to do. I spend […]

Infusing Love: Step Aside, Mom Advocate Coming Through

  This past month we had the fight of our lives. My employee insurance runs February through January and my employer offered a new insurance plan this year. Much to our dismay, the insurance would not cover my son’s factor medication. Our insurance wanted our son to fail on three out of four factor products […]

Infusing Love: Letting Him Do It His Way

  For some of us hemophilia Moms we went through the time where we had to hold down our son to give him his factor or buy out the dollar store for him to be rewarded for his cooperation! Finally, we get to the point when holding down or rewards are no longer part of […]

Infusing Love: Seasons of Change

  Life is full seasons, parenting is full of seasons, and most importantly raising a child with a bleeding disorder is full of seasons. Most often when I look back over the seasons the most obvious of seasons are that of survival, like getting from one day to the next or one walking through a […]

Infusing Love: Decisions and Apprehensions

  I came back from HFA’s 2018 Symposium pumped. “Together We Rock” was an experience that left me much better equipped to face the many challenges of having a child with a bleeding disorder. Most of all I met other moms that go through similar situations with their own children; some were even from Puerto […]

Infusing Love: A Surprising Conference

  Parent teacher conferences are synonymous with an interrogation, grilling or even a public debate. I spent about 12 years being on the other side of that debate. I was the one calling the shots, telling parents what their children’s strengths and weaknesses were academically, socially and behaviorally. I was comfortable having the tough conversations […]

Infusing Love: Facing the Music

  It was 2002 when I married Harry, my high school sweetheart. Even then, I never discussed my dad with him because I had to keep my promise. I promised my dad who passed away when I was only 16 to never talk about hemophilia, AIDS, none of it. Harry put the pieces together though, […]

Infusing Love:  A Brotherly Bond

“Watch out for my brother. He’s a bleeder,” Logan will often say when we are at an interactive birthday party. Logan is Maddox’s 5-year-old brother. He is extremely protective of him. Whenever we are at an event Logan will do his best to “protect” his little brother from anyone pushing him too hard or potentially […]

Infusing Love: Understand Your Stress

Caregiving is hard! Did I just state the obvious? I recently saw yet another article about caregivers, caregiver stress, caregiver burn out and the importance of self-care. You know, we’ve all seen them. If you’re like me you may even roll your eyes when you think there are some people that need to be told […]

Infusing Love: Educating Our Children

“A Drop of Blood” Educating our Children “Sometimes I cut my finger, Sometimes I scrape my knee, Sometimes a drop or two of blood Comes dripping out of me. That means I lose some platelets, Some white cells and some red; I lose them by the millions In every drop I shed. But I don’t […]

Infusing Love: Rocking with Hemophilia

When Thomas was much younger, we spent a lot of time in the hospital and as all moms know, keeping a toddler entertained for hours is challenging. I don’t think of him or myself as ancient, but this was pre-tablet days; I would actually haul a portable DVD player and a boxed set of Spiderman […]

Infusing Love: Thanks, But Not Now

HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. Please consult your physician before use of any treatments. We recently had Jackson’s six-month comprehensive visit at the hematologist. A comprehensive visit is an appointment in which many bleeding disorders specialists meet with […]

Infusing Love: How Do You Measure

“525,600 minutes…525,000 moments so dear.”  Just like the song from the musical “Rent,” those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can’t help but look back at 2018 with mixed emotions. For […]

Infusing Love: It Could Have Been Worse

On Liam’s first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive.  Though I was nervous, I had spent a lot of time […]

Infusing Love: Thankful for Pain

My first baby was also my first baby with a bleeding disorder. My husband and I did not know this while he grew inside of my body. So instead of learning about factor products, ports, or how to keep him bleed free, I read about natural childbirth, how to make my own baby food, what […]

Infusing Love: There’s No Quitting

About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.  When we were selected, I was beyond excited.  Running a marathon was on my bucket list.  I know, really cliché, but true.  It was […]

Infusing Love: A Busy First Week of School

My boys went back to school this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth grade. The first week of school is exhausting, overwhelming, and frustrating. It won’t be a picnic for a child with a bleeding disorder and a […]

Infusing Love: Daycare to Preschool

We’ve been lucky enough to have Maddox home with us since he was diagnosed at 6 months old. My husband works nights, so he watches him during the day. We pulled him from daycare at 6 months because we were worried about other kids throwing things at him, and potentially him making the wrong move […]

Infusing Love: Wings To Fly

Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I’ve done my due diligence by asking for his teachers’ names, ensured his schedule doesn’t have him running all over campus, and asking for a meeting with the powers that be to teach them […]

Infusing Love: A Phone Call Away

I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world!  l learned so […]

Infusing Love: Hemo Dads

This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I’m pretty lucky to have a husband who is very involved in Maddox’s infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]

Infusing Love: Aumentando mi conexión con la familia de trastornos hemorrágicos

Soy Sylvia Verardi y vivo en la isla de Puerto Rico. Mucha gente no sabe esto, pero Puerto Rico es un territorio estadounidense en el Caribe; está bastante cerca de las Islas Vírgenes de los Estados Unidos. Somos un Estado Libre Asociado y el año pasado pasamos por dos huracanes, Irma y María, que nos […]

Infusing Love: Your Spark Is My Why

Every year at Symposium, there is some special moment that defines that year’s event for me. As we kick off our 2018 event tomorrow, I’m reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.)   This picture encapsulates our […]

Infusing Love: My Love/Hate Relationship

Some of us love exercise.  Some of us (me!) hate it but love it when you’re done.  What do you find to be the hardest part of exercising? A lot of times it’s finding the time. As moms we’re pulled in a thousand different directions all throughout the day.  Between jobs, kids, and spouses, there is never […]

Infusing Love: Plenty to Keep Her Busy

When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]

Infusing Love: Life’s Little Surprises

My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]

Infusing Love: Talk With Your Children

Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]

Infusing Love: Am I a Carrier?

Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]

Infusing Love: Relating to ‘Wonder’

When I committed to writing this week’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s medical needs, which require the […]