Educating Our Children

“A Drop of Blood”
Educating our Children

“Sometimes I cut my finger,
Sometimes I scrape my knee,
Sometimes a drop or two of blood
Comes dripping out of me.

That means I lose some platelets,
Some white cells and some red;
I lose them by the millions
In every drop I shed.

But I don’t get excited
About my bleeding skin–
For all the blood that oozes OUT
There’s plenty more that’s IN.” 

by Paul Showers

The above poem comes from my son Myles’ favorite book “A Drop of Blood” by Paul Showers. As a parent of a child with a bleeding disorder, properly educating him is of the upmost importance. Especially since Myles will be living with hemophilia for the rest of his life.
The first thing I did when we were told Myles’s had severe hemophilia A, was to start researching exactly what this meant. The only two things our pediatrician told us about hemophilia was it’s a bleeding disorder in which the person is missing the coagulation factor VIII protein, which helps in the process of clotting the blood. It’s usually hereditary and passed from the mother. From my past medical experience, I understood what this meant, since everyone needs certain proteins to help in clotting. However, even with medical experience there is terminology related to hemophilia, medications and treatments that can be difficult to understand. Add in the genetic component and it becomes confusing and overwhelming.  
Five years after Myles’s diagnosis, I feel I have a good grasp on hemophilia, genetics surrounding this disorder and its treatment. Now it’s my time as a parent to continue educating Myles about hemophilia but also on how to be a self-advocate. Myles is a very bright and intuitive boy.  He understands the basics of his disorder, such as he bleeds longer, bleeds can occur in his arms, knees and head.  He is aware he gets frequent nosebleeds for unknown reasons. Myles is also aware that his factor is extremely important to keeping him safe. In the past year, Myles has enjoyed reading the book “A Drop of Blood.” This book touches on the basic components of red and white cells, platelets, how much blood is in the human body and how scabs are formed. The book also includes a pretty cool experiment, it has a child holding their hand over a flashlight and asking what color they see?  Then it goes on to explain the red they’re seeing is blood in their veins. Myles loves doing this experiment.
Reading this book with Myles has helped him learn about his blood and its importance. Myles has also enjoyed researching blood and veins on both Google and You Tube. When we have difficulty poking a vein while infusing, I let Myles know that this isn’t his fault, that sometimes veins like to play ‘hide-n-seek.’ He questions why this occurs and I explain that when veins constrict, they become more difficult to find.  He’s learning about hydration and how important it is to make giving his factor much easier. As Myles ages, these are all extremely significant as he will undoubtedly be self-infusing.
Last year, Myles gave an impromptu presentation to his kindergarten class on what hemophilia is, what types of sports can hurt him and how his medication is extremely imperative to keeping him safe. His teacher was so proud of him, she called me on her lunch to tell me all about his presentation and said she wished she had videotaped it. When Myles got home from school that day, I reinforced how proud I am of him.

Lindsay lives in New York with her husband, Alan, and her sons, Zachary and Myles.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.