I've decided to start re-posting blogs that I have written for other sites here, in case someone happens to stumble upon them. Below is one I wrote for Whole Hearts last month.
My family participates in the CHD support group at Medical
City Children’s Hospital, called Amazing Little Hearts. Our group meets each
month to share stories, hear doctors and others speak about CHD topics,
fellowship, and support each other. Occasionally, we have an outside group come
and speak to us about programs or special opportunities for our families.
Not too long after Tucker went home from the hospital for
the first time, we attended a meeting that had one of these special guests. Two
sweet ladies came to speak to us about a new program that was beginning at the
hospital. These ladies shared the story and inspiration behind the Beads of
Courage program.
If you aren’t familiar with Beads of Courage, here is an
excerpt from their website:”The Program is a resilience-based intervention
designed to support and strengthen children and families coping with serious
illness. Through the program children tell their story using colorful beads as
meaningful symbols of courage that commemorate milestones they have achieved
along their unique treatment path.” Basically, kids earn beads for each test,
surgery, procedure, needle stick, treatment, etc. and the beads are strung on a
necklace for the child to wear as a testament to their courage and resilience.
Beads of Courage supports kids with cancer and blood
disorders, cardiac conditions, burn injuries, Neonatal ICU stays, and other
chronic illnesses. Each of these conditions has its own specific program guide
that fits the treatment cycle of the condition.
Beads of Courage is now in over 140 different children’s
hospitals in the United States, Canada, New Zealand, Japan, and the United
Kingdom. Over 30,000 children are benefiting from this amazing program, with
more being added each day.
Since Tucker is only 3 years old, he doesn’t really
understand his beads yet, but he definitely loves them and likes to look at
them. The older kids in our support group do understand the beads and know that
they represent needle sticks, procedures, and the pain that is associated with
CHD. Despite the fact that the beads represent “bad” things, the kids love them
and wear them like a badge of honor. They know that they earned those beads
with their bravery.
Our kids go through so much in their fight with CHD, it is
important to reward them when the days are tough. Beads of Courage is a perfect
way to provide hope and comfort, even when it seems like the fight is just
beginning. The beads also provide a tangible way for each child or family to
their story.
Behind the program is a large group of donors and artisans
who make the beads possible. Donors and organizations provide the funds to
operate the program at local hospitals. There are scores of special beads that
are made by skilled glass artisans. These special beads represent major
milestones in a child’s treatment and are especially treasured items.
If your hospital doesn’t already have a Beads of Courage
program, you can contact them through their website, http://www.beadsofcourage.org/, to
find out how to get one started.
Just like Beads of Courage, Whole Hearts Foundation is
trying to bring hope to the courageous kids and families battling against
congenital heart defects. Our mission is to provide education, support,
connections, and innovation to our families. Also, like Beads of Courage, Whole
Hearts relies on the generosity of others to be able to reach these families.
You can make a tax-deductible donation to Whole Hearts by going to http://www.wholehearts.org/HowtoDonate.aspx.
Each of Tucker’s beads tells a story. They tell a story of
pain, surgery, and a broken heart, but they also tell a story of triumph,
courage, hope! What is your child’s story? We would love to share it with the
Whole Hearts family!
