Mom’s Blog: Infusing Love

Infusing Love: Assessing the Risk

August 6, 2014

Risk plays a major factor in what activities we allow our children to take part in. From the moment they are born, we, as mothers, worry about their physical and mental safety, and do our best to guide them in the right direction. Risk helps us determine the limits and boundaries we create to keep […]

Infusing Love: Fear of the Unknown

July 30, 2014

Today, HFA is pleased to introduce new blogger, Kari. 聽Kari and her daughter have a rare bleeding disorder, Platelet Storage Pool Deficiency (PSPD). Continue reading as Kari introduces herself and shares more about her and her daughter’s diagnosis. Every morning when I wake up, the first thing that usually pops into my head is my […]

Infusing Love: Is There A Manual For That?

July 23, 2014

We have all heard the clich茅s about needing a manual for parenting but one doesn鈥檛 exist. Parenting is hard, exhausting work. Hemophilia parenting is a whole other dimension; one that vaguely looks so surreal that it cannot possibly be the way we live. I remember the doctors, nurses and other HTC staff members loading us […]

Infusing Love: Invincibility Syndrome

July 16, 2014

In May of this year Max, gave me factor for the first time. I was getting ready for HFA鈥檚 first regional Gears for Good 聽bike ride in New Hampshire. In preparation, I was out riding my bike ten or more miles every chance I got. Max would often drop me in one spot and then […]

Infusing Love: On The Edge

July 9, 2014

Two boys who live on opposite sides of the International Date Line met this past May and it was magical. The two boys, ages 10 and 14, both share a love of Legos, tormenting their siblings, and guzzling root beer. Both boys also have severe Hemophilia A, as well as a long history of high […]

Infusing Love: Factor Where?!

July 2, 2014

I鈥檝e given factor in the back of a moving car, at the beach while on vacation, and even in a tent while camping.聽 When most parents start learning to give factor, they learn at their kitchen table, or at the Hemophilia Treatment Center (HTC).聽 Like most parents, a nurse began giving my son his factor […]

Infusing Love: Hi Ho, Hi Ho…It’s Off to Camp He Goes

June 25, 2014

Recently, I saw on Facebook a mom express anxiety about sending her child to hemophilia camp. I also had a lot of anxiety when first sending my son, Micah, to camp.聽 One thing that really helped me was volunteering beforehand as a camp counselor. I spent a week at camp in a cabin with kids […]

Infusing Love: Knocking On Capitol Hill’s Doors

June 19, 2014

Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the late fall of 2005. My husband called […]

Infusing Love: A Father’s Perspective

June 15, 2014

Today HFA is proud to present a special “Infusing Love” blog — an excerpt from our new book, “Dads in Action: Real Stories from the Bleeding Disorders Community.” 聽To order your FREE copy of the book, click HERE. Parenthood began for me as it has for many others; I was a first-time father, venturing through […]

Infusing Love: Identical in My Heart

June 11, 2014

I hear the term 鈥淣ature vs. Nurture鈥 often and sometimes hear about studies or watch TV specials with identical twins switched at birth and how alike they still are.聽 Their temperaments, likes and dislikes, even their career paths surprisingly often fall into similar categories. That鈥檚 not the case with my twin daughters. Even during pregnancy […]

Infusing Love: The Hard Facts About Factor

June 4, 2014

Although it is fact that my son, Christian, has severe hemophilia, and a fact that we had no family history, the treatment for his condition is not as simple a fact. 聽I appreciate my ability to have a choice and voice in his treatment options, but sometimes I feel even more fear that I will […]

Infusing Love: His Turn to Choose

May 28, 2014

My baby with hemophilia just turned 12. I think about how lovely it could be to keep him a snuggly little boy forever, but it just isn鈥檛 going to happen. He鈥檚 growing up and he鈥檚 his own person. As a family, we鈥檝e discussed a fair bit about how your body is your own. With my […]

Infusing Love: Play Ball!

May 21, 2014

Flip the calendar back to June 2010. It was a typical hot Virginia weekend and the baseball season was in full swing. I was in the stands as a proud parent and my husband was on the field as an assistant coach. Our son, Nicholas, 7 years old at the time, had made his first […]

Welcome, New Mom Bloggers

May 14, 2014

When I think of summer I am reminded of my childhood spent outside playing with my friends. We’d run barefoot in the grass or hang out at the pool. Sometimes I long for those days and what I realize that I miss the most is the companionship of my friends. Being a mommy is isolating […]

Infusing Love: You Know You’re a Hemo Mom When…

May 11, 2014

Everyone finds coping mechanisms to get through stressful situations. Moms quite often bear the brunt of the stress as caregivers, and many moms of children with bleeding disorders find humor, and especially sarcastic humor, to be a helpful way to deal with the day-to-day issues of hemophilia or other bleeding disorders. They see the irony […]

Infusing Love: Patience for the Patient

May 7, 2014

I am a terrible patient. I only realized this about myself within the last few months. I have personally used the medical system on a very minimal basis and have never engaged an emergency room or specialists in any of my own care. I do my yearly wellness check and I get out the door […]

Infusing Love: A Bird’s Eye View

April 30, 2014

I don’t think most people would say that they like to be stuck with needles on a regular basis. I have heard stories of big, manly, tattooed men on the brink of tears when a needle approaches, but those of us with children who have a bleeding disorder know that we have some of the […]

Infusing Love: I’m Not Bossy. I’m a Hemo Mom

April 23, 2014

You may have seen the new campaign, “Ban Bossy” that features Beyonce, Michelle Obama, Sheryl Sanberg and other prominent female figures. This campaign is focused on encouraging girls to be confident leaders, while discouraging labels such as bossy, aggressive, angry, or one of the many other commonly used epithets. I think we as Hemo Moms […]

Infusing Love: The Union Behind My Reunion

April 16, 2014

The thing about kids is that they grow up 聽they move on and make their own choices. That鈥檚 what Max did 鈥 he moved on and made his own choices. That鈥檚 not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent […]

Infusing Love: Hug O’ War

April 9, 2014

I grew up an only child raised by my grandparents, so I never had the sibling experience of arguing and fighting with another child in the house.聽 As a mom, that battle between siblings and the idea of sibling rivalry has been a foreign concept to me.聽 Sure, there were periods of my life when […]

Infusing Love: Pass to Play

April 2, 2014

Thomas recently had a project at school that required group work over a few weekends.聽 Another mom in the group offered to host the boys (for which I was grateful 鈥 I didn鈥檛 particularly want a group of five 5th grade boys in my house for several hours over the weekend.) At the time, Thomas […]

Infusing Love: It’s All About the People

March 26, 2014

In 2008 my husband, two kiddos and I traveled to our first Hemophilia Federation of America 聽annual Symposium. We had been to a couple of NHF meetings since the kids had been born but we did not know much about HFA. Kim Bernstein, a truly talented community advocate, had been pushing me that I really […]

Infusing Love: Every Person You Meet Is A Chance to Change the World

March 19, 2014

I love awareness months. I look at each one as an opportunity to educate myself about other conditions, causes, and to be a voice about something that affects you or a loved one personal. I like to share what our family deals with, not for sympathy, but in the hope to raise awareness. March is […]

Juggling In the Hemophilia Circus

March 12, 2014

Multitasking is a way of life in today鈥檚 world.聽 We watch television while cooking dinner and simultaneously helping our children with homework.聽 We reply to email while having several windows on our computer open, all while our cell phone is glued to our ear.聽 When you live with a bleeding disorder you master the art […]

Community: You Are Never Alone

March 5, 2014

There is something special about the hemophilia community. I have never experienced anything like it. I have friends that have children that are affected by diabetes, cancer, ADHD, and the autism spectrum, but even though these families are among extremely large support communities there is nothing like the hemophilia community. 聽聽Even though we may be […]

Right Here, Right Now

February 26, 2014

ad路vo路ca路cy noun \藞ad-v蓹-k蓹-s膿 : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]

Hazy Shade of Winter

February 19, 2014

The first day of school is supposed to be hot, sunny and bright. Thomas鈥檚 first day of school 鈥 actually his second first day of school 鈥 was on February 4, 2014 and only had a high of fifteen degrees Fahrenheit.聽 It was not your typical first day of school in many ways. It was […]

A Milestone A Year in the Making

February 12, 2014

By Sonji Wilkes A year ago this week, 鈥淚nfusing Love: A Mom鈥檚 View鈥 was born.聽 Like any newborn鈥檚 first year, time has absolutely flown by.聽 The wonderful thing about breathing life into something is the relationships and lessons you gain during the journey聽 —聽 鈥淚nfusing Love鈥 has certainly taught me a few things along the […]

Time is Running Out 鈥 for You!

February 5, 2014

How are you supposed to find time for yourself?聽 The never-ending housework, cooking, homework, schoolwork, sports activities, meetings, volunteering, 40+ work week, can leave anyone tired. Add hemophilia to the mix with the supply ordering, delivery, bleeds, doctor appointments, missed school and work, and it can be downright overwhelming. Where can you insert 鈥渕e鈥 time […]

To Plan or Not to Plan

January 29, 2014

I am not spontaneous. The 鈥渟pur-of-the-moment鈥 gene did not get passed along to me, or anyone else in my family.聽 I am definitely a Type A kind of gal.聽 When it comes to holidays, vacations, and family dinners I love to make plans months in advance so it will be a memorable event.聽 Anticipation of […]

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