Friday, February 19, 2010

Beads of Courage

Our family belongs to a support group called Kids at Heart.  It is for families who have been treated by the cardiac surgeons at Egleston Hospital (Children's Healthcare of Atlanta).  Through Kids at Heart, I recieved an email today about a fundraising event for an organization that is coming to Sibley Heart Center at CHOA, and I am so excited.  I thought I would share...

The organization is called Beads of Courage.  It actually exists in MANY pediatric hospitals throughout the country.  Their goal is to help 'kids with serious illnesses record, tell, and own' their journeies.  They do this by issueing these children beads for every procedure they go through.  The beads for each procedure are unique to that procedure, as well as unique to each other in that they are all hand made and donated.  Children collect these beads as a record of their journey of survival, and journal about each bead and why it was received as they go.  This idea is part of a concept called art-in-medicine, and is meant to be a supportive program for both patients and family. 

One part of this program I particularly like is called "Team Beads of Courage".  As an athlete competing in any event is asked to make a donation, and is then given a bead.  They were that bead during training and then during their competition.  After they complete their event, they write a letter to a child who is coping with an illness, and include a photo of them at their event with their bead.  The bead and letter are given to a child as part of the Beads of Courage program.  The athlete is given a bead of their own, so that they can start their own collection of beads as they continue to compete in events as part of Team Beads of Courage. 

This program is coming to Sibley in Atlanta, and I can't wait to get a collection started for Sam.  Chris and I plan to participate in the Team Beads of Courage as a way to give back to this program what this program will be giving to our own son.    Check out their website for the other 50 hospitals across the country where this program can be found, and get involved if you can!


Saturday, February 6, 2010

Blog Dedication

Since becoming parents to a son with a congenital heart defect, our lives have been consumed by doing everything we can to keep him healthy and happy.  I can't even count the number of times I have sat at this computer and searched for information on CHDs, only to be disappointed at the lack of available public knowledge.  We, like all CHD parents, have had to figure this heart disease thing out on our own.  Well, not entirely alone.  We have slowly built up a 'heart family' consisting of strangers from across the country who are going through their own heart journies with their own children.  Through them, we have found knowledge, hope, and support.  I hope this blog can return the favor.  I hope to provide a source of information and support for all those who are seeking it. 

I am also hoping this blog can help with our 'parenting' in the future.  Being a parent is hard. I've only been one for a year, and that year was rough enough. I don't want to think of how bad it will get when I've got teenagers. And I can't imagine how I am supposed to share this love and attention between MULTIPLE children; one takes enough of me! Add to that the stress of having a child with a chronic medical condition...I'm exhaused just thinking about it. How do we take care of our medical miracle without pushing our other children into the shadows? How do we help all our children live normal lives? In an attempt to separate being a 'heart' family with being a 'normal' family WITHOUT trying to hide our 'heart' family pride, I hope to use this blog to provide an official place for heart related postings.  Our original blog (LilWim) will continue to be our family blog, and will hopefully allow us a place to celebrate our children equally and share our family's journey through life with a little less focus on medical queries. 

Who knows what these two blogs will evolve into.  All I know is that I need a place to share my family, I need a place to share our heart story, and I think that is best done by separating the two and giving them equal opportunity to shine.  Keep an eye on them both, and feel free to share your journey with us, too!