Friday, April 17, 2015

World Hemophilia Day

What I Want You to Know

Here are a few things that I want those of you not affected by a bleeding disorder to know:

My boys are tough!
  • They have been poked with needles more in their 9 year and 18 year existence than most people ever will. 
  • They have experienced excruciating pain in their lives from bleeds and manage to laugh and smile more than most people, because a day without a bleed is precious.

My boys are fearless!
  • They stare down hemophilia every day and because they do that, not much can rattle them. 
  • Their hearts and spirits are some of the most beautiful I have ever seen. 
  • They have great compassion because they have experienced crazy pain.  And when they see another person suffering they relate in a way that others cannot understand.

Their dad is amazing!
  • He can calm their fear and anxiety in the midst of a yucky situation with laughter, silliness and crazy songs galore!
  • Even when he is scared he is calm under pressure and can help make critical decisions about their treatment.
  • He loves more than any other human being I have ever met and he would go to the ends of the earth for his boys.

As for me….
  • I have done things I never dreamed I would do while advocating for my sons and there is plenty left to do. 
  • There is always an answer and just because a doctor does not have it, I’ll find someone who does. 

I never give up. 

I believe in hope. 

A mother’s love and passion for her children is fierce!  When they struggle or hurt it makes her fight harder than ever.  

This crazy, unpredictable, debilitating, expensive, painful condition that ties us together makes us stronger.  

To all of the mom’s and dad’s out there protecting, fighting and advocating for their children, remember that you are not alone.

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Friday, April 10, 2015

The Brother I Never Knew

In honor of "National Siblings Day," I wrote a post that originally appeared on the Infusing Love blog hosted by the Hemophilia Federation of America.  
This is about my brother.  He lives in my heart.
I have always felt my brother's presence in my life.  He was born in May of 1962.  There are no pictures of him or any stories about him.  He only lived for five days.  I was born, 6 years later, in October of 1968.
I remember going to the cemetery to visit the family graves when I was a kid.  My brother, Ronnie, was buried with my grandfather.  He did not have a headstone and my parents never talked about him.  I was curious, I wanted to know more about him, but they always shut me out.  His death was a taboo subject in our home.  I can't imagine the pain my parents experienced losing a child.
I often wonder, “How in the world, even as a teenager, could I feel his presence in my life?”  Looking back I believe Ronnie was trying to tell me something that would change my life forever.  To read the rest of this post visit

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