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Infusing Love: Port to Adulthood

January 3, 2018

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 […]

Dear Addy: Teaching Independence

September 19, 2017

Dear Addy, I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine? Signed, Introducing Independence Dear Independence, This is a great question to be asking now, as transitioning to independence is […]

Dear Addy: Sports

September 4, 2017

Dear Addy, My son has hemophilia and loves to play sports. He is going into 6th grade this fall and wants to join the soccer team. How do I set realistic expectations with him and his coach? Signed, Soccer Mom Dear Mom, You are not alone in your concerns – this is a common question […]

Infusing Love: As He Climbs On the Bus

June 28, 2017

By now, for most of us another school year has come to an end. For me this usually means complete and utter joy! No more homework, no more early wakes up to catch the bus, no more worrying about clean PE uniforms, and the list goes on and on. Nicholas just finished the 8th grade. […]

Infusing Love: Life Imitates Art

May 3, 2017

When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch […]

Infusing Love: I’ll Be Ready

January 25, 2017

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

Infusing Love: Nuestra Responsabilidad Como Padres

December 21, 2016

Sin darnos cuenta muchas veces queremos “ayudarles” y hacemos las cosas por ellos. Ahh que mucha paciencia tenemos que tener.   Debemos ser conscientes de que en el futuro ellos necesitan hacer las cosas por si solos. Debemos comenzar a temprana edad, a darles responsabilidades de acuerdo a sus capacidades y edades. Pero, la etapa de […]

Infusing Love: Growing Up So Fast

December 14, 2016

  This week’s Infusing Love entry is a poem co-written by our longtime blogger, Kari, and her daughter, Scarlett. I’m learning to be safer, watch my step, and stay out of harms way. Each day a new lesson, on how to exercise and how to play! I might start off feeling intimidated, scared or shy. […]

Infusing Love: It’s About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.  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: Her Own Protector

August 19, 2015

The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I […]

Infusing Love: Mom Interrupted

July 15, 2015

I am finding myself in an interesting point in my life.  My oldest son is home for the summer and has finished up his first year of college. My youngest son is about to start his senior year of high school. So I’ve successfully launched one bird out of the nest and hope I can […]

Infusing Love: Real Progress on the Road to Independence

April 29, 2015

Note: This is part two of a three part series. Click HERE to read part one. Although my Benny is still not self-infusing, the last few months have been a positive journey for us! As noted in my last blog, my 12-year-old has been extremely anxious and stressed about doing his own needle stick. We […]

Infusing Love: The Union Behind My Reunion

April 16, 2014

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

Must-Have Gifts

December 18, 2013

“Mom, can I have a Cool Tools Tow Truck?” This was the question Max asked me when he was 4 years old and Cool Tools were THE gift of the year. Like so many of us, I had good intentions, but work, bleeds, motherhood, more bleeds, and life kept me super busy. As Christmas approached […]

Up, Up, and Away!!!

July 17, 2013

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

Self Reliance To the “Max”

July 10, 2013

By:  Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence.  He was 6 the first time he self-infused.  He did it at our chapter’s family camp with the guidance of some amazing older mentors.  In those days things weren’t nearly as organized as they are now; no gaggle […]


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