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Mom’s Blog: Infusing Love

Infusing Love: A Life Never Imagined

February 25, 2015

Have you ever signed up for something you felt you were not quite qualified for, but went ahead and did it anyway? I have, and I鈥檓 preparing to do it again.鈥 Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.聽 For most of my life, I […]

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: I Get By With Help From My Friends

December 31, 2014

              I am a true believer in the saying, 鈥渒nowledge is power.鈥 However, I also believe that the knowledge you attain must come from the correct source and at the right time. I have learned that this is even more true when it comes to hemophilia and motherhood. It […]

Infusing Love: What We’re Truly Thankful For

December 24, 2014

Late this September, during the HFA Gears for Good Charity Bike Ride, I had one of those conversations in life you remember forever. It was with my son鈥檚 best friend, Aidan. About three years ago in elementary school, Benny, our now 12 year old with severe hemophilia, befriended a classmate who had just moved to […]

Infusing Love: Anything is Possible

December 17, 2014

His name was Adam. And when I met him, I let out a huge sigh of relief. He was rather good-looking, and he seemed smart, strong, capable and perhaps most importantly, healthy. (Before you jump to any conclusions, this wasn鈥檛 a blind date.) My friend Carrie had introduced me to Adam. They shared a ski […]

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: From One Mom to Another

November 19, 2014

My non-hemophilia mom friends have often say to me, 鈥淚 just don’t know how you do it. I just can’t imagine raising a child with hemophilia.鈥 I normally reply with, “my son with hemophilia is my baby, and I’ll do anything for him.” Earlier this summer, this very conversation played out between myself and HFA […]

Infusing Love: Finding Time for Me

November 12, 2014

Often times I am talking with other moms and the conversation comes up about how tired we are or how we find it difficult to make time for ourselves. As caregivers, we are constantly doing for others. We are making meals, help with homework, running errands, or being a taxi for our kids. Being a […]

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: Taking Care of the Patient & the Caregiver

October 15, 2014

I don鈥檛 think I鈥檒l ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with聽Platelet Storage Pool Disorder (PSPD). It was 10:30 AM on a聽Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that […]

Infusing Love: I Am Who I Am

October 8, 2014

I am who I am because of you. I usually hear that in reference to a partner or spouse, not a child. For the past 22 years, Max has given me more laughter, tears, and lessons than anyone I have ever known. I think many hemophilia parents might feel the same, whether we had kids […]

Infusing Love: It’s a Family Affair

October 1, 2014

I grew up knowing the word hemophilia, although as a child, I could not have told you what it exactly meant. I knew that some of the boys in my family bled a lot, but nothing about the different severities or types.聽 I knew that my Granddaddy was a bleeder and that he died when […]

Infusing Love: Outside the Comfort Zone

September 24, 2014

[glossary_exclude] This week is the 4th annual HFA Gears for Good bike ride, which means it鈥檚 also been one year since I did my first Gears for Good ride in DC.聽 As I look back on those three days, I鈥檓 flooded with many different emotions. I am not a cyclist.聽 When the ride was about […]

Infusing Love: Poke, Pain, & Pressure

September 17, 2014

The reality is this: my Benny is not self-infusing yet. He is 12 and while he participates fully in the preparation of his infusions, the 鈥減oke鈥 is this huge mountain he doesn鈥檛 feel prepared to climb yet.聽 I鈥檒l access a vein, hand him the syringe to push his factor and even walk away as he […]

Infusing Love: Helping Others, One Finger at a Time

September 10, 2014

Shortly after Thomas was born, the National Hemophilia Foundation (NHF) Annual Meeting was being held in Salt Lake City.聽 My husband, Nathan, and I were eager to absorb any and all information about hemophilia, so we made the decision to pack up our 2-year-old daughter, Nora, and 3 months old Thomas, and take a road […]

Infusing Love: Grandparents Know Best

September 7, 2014

Today is a day for celebrating grandparents, our experienced mentors in this journey of parenting.聽 Our Infusing Love mom bloggers share what their parents or grandparents have meant to them and how they’ve offered support when times get tough living with a bleeding disorder.聽 ________________________ Growing up, celebrating Grandparents Day was just as big as […]

Infusing Love: Striking a Balance

September 3, 2014

One of the positive things about hemophilia is the different sports and hobbies it has reintroduced into our family life. When Micah was three, we attended our first hemophilia fundraiser.聽 It was at a bowling alley.聽 He absolutely loved it and thought it was funny when the pins fell down and everyone clapped. 聽He loved […]

Infusing Love: Hemophilia Makes Me A Better Parent

August 27, 2014

When my newborn baby was put into the Neonatal Intensive Care Unit (NICU) for a week, I was hit by a powerful force of immense strength and love I didn鈥檛 know I had.聽 聽My husband and I already were blessed with our firstborn son who did not have any health concerns.聽 While we love both […]

Infusing Love: Educating the Educators

August 20, 2014

Our Back to School toolkit was created for parents of children with a bleeding disorder. Check it out for examples of IHP, 504 & IEP plans, and a customizable PowerPoint presentation to help you advocate for your child:聽/?p=17892 In a week my oldest son, Marques, will start middle school and I can鈥檛 help but to […]

Infusing Love: Mama Warriors

August 13, 2014

  Some things can be measured: flour for cookies, a yard of material, an evaluation at work, and the number of times a heart beats, but what about pain?聽 When your child is in the hospital and is in pain the clinicians will often ask 鈥淲hat number is your pain?鈥 or 鈥淲hich face is your […]


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