Donate

Mom’s Blog: Infusing Love

Infusing Love: He Needed Me

November 23, 2016

I am exhausted. So very exhausted. I am pleading to myself that there isn鈥檛 something wrong; that the whimpers and small cries I hear as he sleeps aren鈥檛 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: 鈥淎 negative mind will never give you a positive life.鈥 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 鈥淥n This Day鈥 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.聽 We get up, go to work and school, have fun, go on trips, eat and play鈥.it鈥檚 all very good.聽 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鈥檛 your 鈥渢ypical鈥 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鈥檛 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 diagn贸stic

September 21, 2016

von Willebrand Disease鈥 驴Qu茅 es eso? 驴Qu茅 clase de enfermedad tienen mis hijas? 驴Es contagioso? 驴Qu茅 le puede pasar? Esta y much铆simas preguntas m谩s fueron las que nos hicimos el d铆a en que la pediatra en Albany, Nueva York, diagnostic贸 nuestra hija menor, Juliemar, 8 a帽os a este momento, con von Willebrand Disease (vWd), tipo […]

Infusing Love: No (Wo)Man鈥檚 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鈥檛 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, 鈥淢an, he was a cute baby.鈥 My second thought was, 鈥淭hat was right before he had a spontaneous epidural bleed.鈥 Nick was eleven months old, in daycare, and not walking […]

Infusing Love: Speaking Pok茅mon

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鈥檛 overly […]

Infusing Love: Careful What You Say

August 3, 2016

I had a 鈥淗emo Mom鈥 moment of synchronicity earlier this summer. In my last Infusing Love post, 鈥淪uperheroes Need Rest Too,鈥 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 聽-month-old twin siblings. Marques eventually […]

Infusing Love: Defining Normal

July 26, 2016

鈥淗ow do you do it?鈥 鈥淚sn鈥檛 it difficult?鈥 鈥淒o you feel as though you need to wrap him in bubble wrap?鈥 鈥淗ow do you handle all of it?鈥 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鈥檚 About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.聽 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 […]

Infusing Love: More than Max鈥檚 Mom

July 6, 2016

I am a modern day success story. I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I 鈥渨ould probably never be able to have children.鈥 I set out to live my life as such. You know those lists of 鈥渉ave […]

Infusing Love: Paying It Forward

June 29, 2016

Bleeding disorders like hemophilia can mean days of isolation, worry, and pain. This life is stressful, but sometimes days are filled with hope and promise. Thankfully, we have had many of those hopeful and helpful moments. When Benny was a baby we had the good fortune to attend a local community picnic and meet a […]

Infusing Love: Because I am a Mom

June 22, 2016

Being the mom of a child with a bleeding disorder, I am used to questions and comments from others. More often than not, they are comical and provide a bit of relief, but there is one comment that seems to be set on repeat, and I am overwhelmed by it. The comment regularly comes after […]

Infusing Love: It鈥檚 Perfect for Us

June 15, 2016

This past April my husband, Joe, and I celebrated our 22nd wedding anniversary. Statistically speaking, I guess you could say we are one of the lucky ones. Throw in the fact we have three kids with chronic illness, now we are defying the odds. By no means do we have a perfect marriage, but what […]

Infusing Love: Superheroes Need Rest Too

June 8, 2016

Ask for help! It seems easy to do, but it takes a lot of effort. If someone would have told me, as a hemo mom, 鈥淵ou need to ask for help!鈥滻 could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]

Infusing Love: Nurturing My Soul

June 1, 2016

Do you ever wish there was someone who truly understood what you were going through? 聽Do you wish you could surround yourself with a support network of other women in your local area, but can鈥檛 find them? Do you wish you had more support from women in the bleeding disorders community? In 2013, a group […]

Infusing Love: Out of the Mouths of Babes

May 25, 2016

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

Infusing Love: My Blood Gang

May 18, 2016

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

Infusing Love: Isolated No More

May 10, 2016

Until recently my husband and I didn鈥檛 realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn鈥檛 have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]

Infusing Love: I Get To Decide

May 4, 2016

I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children鈥檚 feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan鈥檚 sweet personality, but […]

Infusing Love: No Promises

April 26, 2016

What is the last thing you say to your child before they leave the house? Maybe it is 鈥淚 love you.鈥 鈥淏e careful鈥 is always toward the top of my list. Ideally, I鈥檇 like to hear 鈥淵es ma鈥檃m,鈥 or 鈥淚 will鈥 in response. Do I ever hear that?! No! Nick鈥檚 favorite response is 鈥淣o promises.鈥 […]

Infusing Love: To Go or Not To Go

April 20, 2016

Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children鈥檚 Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]

Infusing Love: Never Too Young To Advocate

April 13, 2016

For the past four years I have been participating in Hemophilia of South Carolina鈥檚 legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.