Tuesday, September 22, 2015

My Bead of Courage Boy

I absolutely love the Beads of Courage program.  My son Caeleb "aka Christian" has participated in the program for the past few years at the University of New Mexico Children's Hospital.  He was selected as the 2015 Honored Bead Member for New Mexico!  This past weekend locations across the country were holding events to make beads and honor children.  Family and friends could watch the glassblowers make beads, children could pick up their "Dream Bead" that they requested before the event….it was fantastic.

Caeleb requested a "Sonic the Hedgehog" bead because "he is fast, mom."
The artists at High Desert Flameworks are just amazing.  They are doing wonderful work for our children with chronic illnesses.

When you struggle with illness and are in and out of the hospital as much as our chronic kids are, sometimes it's the little things that make a big difference during a hospital stay.  Caeleb would often be in tremendous pain or want to go home so badly but we had days left before we could leave.  His strands of beads signified his strength and courage.  We would hang his beads on his IV pole and they were always a talking point when someone would enter his room.

Thank you, Beads of Courage.  Your program made my son's journey a tangible beautiful process despite the circumstances.
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Thursday, September 10, 2015

A Red Ribbon

I made a red awareness ribbon and pinned it on my jacket.  I've worn ribbons for causes before, but this time it's different; more meaningful.  The red awareness ribbon represents many different causes but this weekend I will be wearing it for Hemophilia/Bleeding Disorders and AIDS/HIV. 

In early June I was selected as a speaker for TEDxABQ and my talk is about having hope in the midst of chronic illness.  One thing I have learned in the TED process is definitely how to cut a story down to the important points and Saturday I will deliver an 8 - 9 minute talk on the journey of my family with hemophilia and inhibitors, but one thing I had to make sure I mentioned, while I have this amazing platform, is our lost generation to HIV/AIDS.  I didn't realize how important it would be for me personally.

I had an older brother who only lived for five days after losing his life to complications from a head bleed.  I don't know if my parents or the doctors in that small, South Texas town knew what was happening to him but maybe if they did my brother would still be here today.  Perhaps he would have been infected with HIV, developed AIDS and been one of the many who lost their lives, or he may still be here today, living with HIV and joints that are a terrible mess.  Regardless of the possibilities I hold this generation of men with hemophilia close to my heart in a way I never understood when my now 19 year old son was little.

It is our responsibility as a bleeding disorders community to keep this legacy of the1980's alive.  No, we don't want to "dwell" on terrible things, but this was real and vicious and affected many, many lives.  I am so grateful that both of my sons are doing well.  We have definitely had some horrific times with hemophilia and inhibitors but on the other side of the nightmare is hope.

I know many who are affected and reading this may be in the middle of the nightmare and know that there are many who have been where you are.  My hope is that the "other side" of the nightmare comes soon.  I have learned to not take the smallest of things for granted and when big, wonderful things come my way, it's just amazing.

Saturday I am taking the entire bleeding disorder community on stage with me as I deliver a message of hope and awareness.  I will make sure you are not forgotten.

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