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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

 

 

 

 

 

 

 

 

I am notoriously klutzy. I always have been. My father used to joke that he should have named me “Grace” because I managed to spill a drink every Sunday at dinner. When I was a kid, I would walk into walls, and growing up in the South, I played outside in the summer, perpetually barefoot. Only problem was how often I stubbed my toes on our asphalt driveway and bled like crazy. It really should have been my first clue that I was a “bleeder,” but it never dawned on me that I was anything other than clumsy.

I recently had another one of those fabulous days. I was climbing the stairs at home and tripped over the last step to the top.  I didn’t think much of it at first, being that, tripping is a regular thing for me.  About a half hour later as I stood up, I realized I couldn’t bend my big toe. I took off my socks and saw the bruising and swelling. This was a reminder that I was indeed diagnosed as a symptomatic carrier with factor levels similar to someone with mild hemophilia and sometimes I need factor, too. At the very least I had a bleed, at the worst I may have broken my big toe.

Sitting at Thomas’ usual infusion spot, I mixed factor and began the infused process. Thomas – my medical assistant – loosened the tourniquet and handed me a piece of gauze as I slid the butterfly needle into a vein. The irony wasn’t lost since Thomas not only inherited hemophilia from me, but the klutzy gene as well. Yet, here we were, moving in unison, treating a bleed. 

Later that evening, the toe started throbbing even more.  I was squirming on the couch trying to get comfortable when Thomas said, “Maybe you need the Cryo-Cuff.”  Not waiting on me to answer, off he went, gathering the gear and ice.  As I watched him, I saw the role reversal taking place: usually I’m the one suggesting treatment, playing medical assistant, and gathering ice. I was proud of him for recognizing what I needed (when I didn’t) and rising to the occasion to take care of me, just like I would have done for him.

We established three rules in our household when the kids were very young:

  • Take Care of Yourself
  • Take Care of Others
  • Take Care of Your Environment

We set those rules with the expectation of teaching our children independence and autonomy.  My husband and I felt those attributes are vitally important as we raise our children to go out into the world and lead productive, healthy lives as adults.  We saw those skills as especially imperative in the context of living with a bleeding disorder. It applies to everything from infusing prophylactically and appropriately when needed, to being an active member of your bleeding community to making good decisions about your living and work environment.

Like most moms, I often feel like I’m failing miserably as a mom.  Sometimes I royally mess up and I stumble through teaching my kids.  There is no clumsiness in this example of our mother-son bonding experience.  As a result of a fall up the steps I was able to see hope and confidence that Thomas has the building blocks to take good care of himself, and others, as he continues to grow.

Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside in Colorado.

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*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.

 

 

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