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: 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 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 a.m. on April 20, 1999, in Littleton, Colorado, […]

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 […]

Infusing Love: Port to Adulthood

I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]

Infusing Love: Different Opinions Don’t Mean They Are Wrong

“So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit, gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic. I’ve seen the comment threads on many […]

Infusing Love: In Appreciation of Providers

It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]

Infusing Love: Through the Smoke

It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I’ve never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]

Infusing Love: The Thief of Joy

Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session was […]

Infusing Love: A Season of Gratitude

I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia. They can’t understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.  How could anyone find good in dealing with a nonsensical insurance company? Obviously, I could […]

Infusing Love: Big Hearts

The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]

Infusing Love: Opening Our Hearts & Home

When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]

Infusing Love: Caregiver to Caregiver

If you look up National Caregiver’s month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]

Infusing Love: An Unexpected Lesson

I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]

Infusing Love: Watching An Advocate Bloom

My 11-year-old, Natalie, is not your typical 11-year-old. She is whip smart, savvy, and mature beyond her years. I suppose that comes with being the youngest of three siblings. You have to wise up when your older siblings are trying to pull one over on you since the day you were born. Natalie has recently […]

Infusing Love: Brotherly Bonds

It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan’s holder and I could never transition him to the other side of the needle. I don’t think I wanted him to do it either, since […]

Infusing Love: Door 1, Nicholas 0

Do you know those moments when you think, “all is right in our lives today?” We have had a few of those moments recently. We had a horribly tough year in 2016. It just seemed that whichever way we looked, something rough was happening to us or our extended family members. 2017 has been a […]

Infusing Love: Overcoming Pain

  When I hear the word “pain” I immediately relate.  We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt?  The reality of our world is that pain is a part of life – we can dwell in suffering or we can […]