Hope Made of Glass

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!

Trent Hamilton

Director of Local Support

Whole Hearts Foundation

Finding our purpose

By Andrea Peters

Over the past year I have come to realize that I’m questioning lots of things around Christianity and God. This is not because I doubt that God exists but because I feel it’s hard to see the good when you feel consumed by the bad. I also have come to realize that the finishing of Caydan’s third surgery and the reality that it’s a waiting game has made these feeling more apparent. I’m no longer able to feel “in control” because now it’s all in God’s hand and for His timing. Not that it hasn’t been all along but I have felt somewhat part of the healing process.

When I met with Caydan’s kindergarten teacher the first week of school she shared that she had just finished a book called “To Heaven and Back”. She (Ms Lisa) herself is a survivor of breast cancer and has an innate sense of God and God’s timing. Now keep in mind that I had just met Ms. Lisa and she knew really nothing about our family, Caydan and our journey. Little did she know that in hindsight I felt God had sent her to me to encourage me to read this book, plus of course teach, nurture and love Caydan.

The book is about a doctor who drowns, experiences heaven and is sent back to earth to finish what God had planned for her – including the death of one of her children. I have struggled recently with what Heaven is like, what passing into heaven is like and why God chose our family. I also have been struggling with the feelings of guilt and shame for feeling this way.

Caydan is doing great – how can I possibly feel like this? God has put so many things into place – how can I not feel like He is with us each and every day and how dare I question His will?

In reading “To Heaven and Back” it became very apparent to me that God’s will was for Caydan to be given as a gift to our family and has helped me better realize my role in our family. I have always been the strong one, keeping us together, planning dr apts, surgeries, ordering medication – I want to fix and make it better – don’t get me wrong I am married to the most amazing husband, father and life partner – but I’m also the one who wants to control.

Some may laugh and say how do you feel control with a child like Caydan – but in some weird way I have felt that but now with control ripped from me I have to let go. I have to let go and focus on my healing and my ability to not feel guilty and ashamed and realize God has given us a gift. But it still leaves questions of how am I to use this gift for His will.

In this book Dr. Neal suggests that you keep a journal for a year and write down the good things that happen and the bad things that happen and what people were part of those circumstances. She then suggests you look over the year and see the “miracles” not coincidences that God has placed in your life. As a quick exercise I went back over the past 6 years – and quickly had tears in my eyes and I saw the hand of God. That is easy to say and can be somewhat stereotypical but really when you look at circumstance after circumstance – that is truly a miracle and the power of God.

As I continue this journey I know I’m not perfect but it’s reassuring to know that God still loves me – no matter what and I have to continue to work on trusting in Him. I have to learn to listen and let Him guide me. I have a very strong faith however the power of the unknown for me – especially with my children – is overwhelming.

If you have time please read this book because it’s powerful – for any parent and especially for parents of a sick child or parents who have lost a child. On her fridge she has a creed – one that I will be putting on my fridge – because what an amazing daily reminder:

I believe God’s promises are true

I believe heaven is for real

I believe nothing can separate me from God’s love

I believe God has work for me to do

I believe God will see me through and carry me when I cannot walk

I still have work to do; work on myself, work on my marriage, work on my children – and God has a purpose for me. This quote from the book has stuck with me – mostly because I think it sums up much of what I have been feeling:

“I also stopped looking to God for help. Believing that I could do it all on my own. In the process, I had let doubts; fear and guilt silently creep in and take over my thoughts”

There is freedom in letting go and realizing God has a purpose for our lives and we must use the talents He has given us for good. I look forward to the continued journey –adventure might be a better work – and revel in the freedom of letting go.