Medical Issues, Opsoclonus Myoclonus Syndrome

Beads of Courage

Beads of Courage

Beads of Courage

We have been trying to get Beads of Courage since this journey began two years ago. I first learned about them from a fellow blog mom Renee’s Little Earthling Blog. Her son’s story was where I read about it.

Norton’s Children’s Hospital

We approached a nurse at the 3rd hospital, Norton’s Children’s Hospital, and she sent in the floor Child Life Worker to talk to me. This was H’s two-day IVIG/Chemo time at the hospital. We had to fill out a form to see if he qualified. There are certain conditions that a child has to have to qualify.

Cancer and Blood Disorders

Cardiac Conditions

Burn injuries

Neonatal ICU Families

Chronic Illness

Do We Qualify or Not?

 

In assuming we qualified, we had to go through a list of procedures. We had to count how many of each category H had from the past to the present—a daunting task. I sat for those two days, and I counted. I read lots of med reports and looked through my calendar to remember. H deserved every single bead because of all that he had been through with this illness.

As I painstakingly remembered and documented, I returned the document to the Child Life worker at Norton’s. We never heard another thing from them. They said he didn’t get to participate in this program at their facility because he didn’t have cancer.

Moving On

I never approached UK Children’s Hospital and UPMC about the Beads of Courage because I figured they wouldn’t let him participate either. The thought passed through my head a few times, but I let it flit on through.

Yesterday, at Vanderbilt Children’s Hospital, the thought came back up. I saw this honey of a boy walkthrough with a smile on his face from ear to ear. He was proud and excited. Yes, he was facing a long chemo day, which is problematic. Yet, he could take some time and string each bead on his necklace. As I saw that, I thought I would ask again.

New Day, New Hospital

Katie, our Child Life worker, came bopping over and said she was fixing to talk to us about this opportunity. I told her what had happened in the past. She just said that H qualified. Since we were never given the opportunity, things had changed slightly in 2 years.

She gave me the form (below), and I just checked everything he has done over the last two years. On the back, I wrote down the things that required great bravery: unique beads. Then, we calculated the days he had been sick. He received beads for every 100 days he was ill.

H’s Choice

H got to pick out a bag made by a woman in Arizona. He carefully chose each bead as Katie explained why he was getting it. That was not so much on his hearing level LOL. He just wanted to select the prettiest bead.

Beads aren’t the be-all and end-all, but it is something that he can know is consistent. Hospitals are not consistent. You have different nurses, different techniques, and different reasons we are there. Beads are colorful, bright, and exciting to kids. The BOC brings joy. He can sit and look at each and know that he did something amazing. He took steps to better himself and his health. He is strong.

When we all returned, I sat and looked through all the beads. I read the reasons why and then A did the same thing. She helped him sort them all out. He sat and strung each bead one by one.

Pure Joy

He was excited about the beads. I have seen some fantastic ideas on how to display them online. He earned three more yesterday, but we will get them on clinic day next month. He needs another 100-day bead, a stick bead, and a clinic visit bead. We will add it to his bag and string it when we get home.

Donate

You can always donate towards Beads of Courage anytime. The website I have highlighted above has a tab about donations of money or beads. The Predators donate money towards this program for Vandy. It gives you the chance to put a smile on a kid’s face.

 

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