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Beads of Courage -- Discussion for all things Beads of Courage; the only not-for-profit, arts-in-medicine program putting to use the talents of glass beadmakers to uplift children dealing with life threatening illnesses, their families and the people who care for them. Families, clinicians and artists alike are welcome to join in! (Thank you to Lampwork Etc. for supporting Beads of Courage and helping to foster communication!) PHOTOS OF INDIVIDUALS OR CHILDREN ONLY ALLOWED WITH THEIR SPECIFIC CONSENT.

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  #1  
Old 2010-02-09, 11:28am
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Elizabeth Beads Elizabeth Beads is offline
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Default Something I can't wrap my mind around - how the beads are strung

First, I make and send a lot of beads to BOC. But I have always been curious about one thing.

How do the kids string the beads they get one by one (Act of Courage beads for example)?

Do they have to restring everything when they get a new bead?

Do they start with a very long string?

Wouldn't that make them feel like they were going to be in for a long haul?

Do they just tie on more string when they get a new bead?

I saw one of the completed strands that was yards and yards long. Surely the child didn't start with 5 yards of string.

Sorry if these are silly questions. (No one expects the Spanish Inquisition.)
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"And all will turn to silver glass, a light on the water, grey ships pass into the west." Annie Lennox
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Old 2010-02-09, 12:28pm
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Perfectly reasonable questions. I'll try to answer them for you.

We use a cord material that is a little less than 1/16 inch in diameter and appears to be almost indestructible. It can be tied and retied many, many times. Each child enters the program with a 3 foot strand of cord and their first name spelled out in letter beads. Beads get added to the strand as they progress through treatment.

One of the aspects of treatment is that there are long periods of boredom, along with varying degrees of feeling crappy. Many of the kids will unstring, re-sort and restring their beads just for entertainment value. Some don't use the strings and keep them in boxes or special bags. One thing, though, is that no matter how they are strung (or not) they can generally tell you in detail what they got any individual Courage bead for and when they got it. The strings of beads often become a point of pride with them as they can show you very directly just how far they have come. When they see other kids with longer strings it is actually an encouragement - sort of 'if they can do that so can I'.
When one string fills up, they get a new one. The strings get worn, strung up on IV poles, strung around the room and are displayed in all manner of other ways. Many of the caregivers wear bead strands as well, so there is a strong bond and an identity built along the way. I always wear mine when I go on a site visit and the kids notice right away. I make an extra bead for my own strand when I fill a special request as a link to that child. It's a very special thing to go to visit kids who have one of my beads or when I recognize a bead made by someone that I know. I can tell them something about the artist and let them know that there really are special people out in the world who are making the beads for them.
Good questions - thanks for asking them.

Robert
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Old 2010-02-09, 12:33pm
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Very cool Robert! Thanks for providing us with the information. Sounds like the beads are well-loved.
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Old 2010-02-09, 12:40pm
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You would be amazed. The kids and their parents really get into it and they do love their beads. When I tell you that every bead is treasured I'm not kidding.

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Old 2010-02-09, 5:11pm
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Thank you for asking, Elizabeth and for answering, Robert.
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Old 2010-02-21, 5:16pm
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I hope you guys don't mind me intruding here , but I was referred here by a beadworker that I contacted on Etsy. My son is in the Beads of Courage Program. He is 2, and about to have his 2nd open-heart surgery.

I posted some of this message on another thread, asking for certain beads to be made, which I of course would pay for. While lurking to find where the most appropriate place to post would be, I came across this post. I hope you don't mind, but I wanted to put my $0.02 in.

I have to admit, I have been lurking here today, and reading all the posts about the BOC, and I am very moved. I never imagined that the beads that mean so much to us, as recipients, also mean so much to those that design and donate them. Without you guys, there could be no program.

When I first learned about the program, online, I thought "How nice..." Our hospital doesn't participate, so I called the BOC program to find out why. They offered to do Beads from a Distance, and I e-mail them a tally sheet and they ship the beads to me. Surprisingly, I found myself eagerly checking the mail for the first shipment, and actually cried when I opened them and could tell how much time and effort went into the special beads. I immediately sat down to string them, and was amazed by the therapeutic value. I have had his beads since June 2009, and have restrung them about 8 times, just because I like to do it. I take them out at least once every few weeks, and count them, and feel them, and examine them, remembering what each one stands for. It gives me a tangible THING to see, and each bead is something that he's overcome, whether it was open-heart surgery, a sedated MRI, an echocardiogram, blood transfusion, dressing change, or just an IV or therapy visit. Each bead is a victory over his heart defects, each one is something that he, and I, have accomplished.

The BOC program has been as wonderful for me as it has been for him, and I'm amazed at how much they mean to us. I was reading a post earlier about how some of your bead artists pray while making the beads for the BOC program, and it brought tears to my eyes. To think that not only you guys unselfishly donate your materials, time, and talent for our children, but also pieces of your souls, that is so amazing and I wanted to say thank you.

I recently sent another tally in to BOC and they are on their way. My son was originally scheduled for surgery on Tuesday, but it has been postponed until March 9th. So I'll have his new beads with me for that, and it will be around 8-10 hours, so I am picturing myself re-stringing and sorting his beads as we are waiting for news. I don't know why it makes me feel better to restring them, and change the order around, and just talk about them, but it does. The strings they send are practically indestructible, yet at the same time tie off really well. My original plan was to do them in chronological order, but I find I like just randomly putting them on to work better for us. When we get new beads, I don't just add them on the end, I unstring all 5 strands and start from scratch.

I know you rarely get to speak with any of the actual recipients of your beads, and I'd be more than happy to answer any questions, whether of a general or personal nature. I am not shy (can't you tell?) and it doesn't bother me to talk about his health, or my emotions, or his long-term prognosis. It actually helps sometimes. He is only 2, so he doesn't understand what his beads mean, but I do, and they mean more to me than I ever thought they would. To someone else, they may be just pieces of glass, but to me they are symbols of pride, strength, courage, and patience. You can e-mail me directly at
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or call at 409-728-1650.

Tamara Lemus
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Old 2010-02-21, 5:35pm
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Oh Tamara, thank you so much for posting your experience with BOC. Your words are so touching. I'm so happy these "pieces of glass" mean to much to you. Best wishing for your son's recovery.
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Old 2010-02-21, 6:29pm
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Tamara, you bring me to my knees.... thank you for posting, it encourages me to work harder for BOC.

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Old 2010-02-21, 8:15pm
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Amen.

I have a new commitment to make at least 3 BOC beads every time I torch. But today I made about 10, just because. I like to think about how a child's face might light up when they see the bead I made for him or her.

Tamara - please come back and keep us updated on your son. What is his name? I want to make a red heart for him. I am going to think of a design for a boy, not my usual flowers.


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Old 2010-02-21, 11:44pm
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Quote:
Amen.

I have a new commitment to make at least 3 BOC beads every time I torch. But today I made about 10, just because. I like to think about how a child's face might light up when they see the bead I made for him or her.

Tamara - please come back and keep us updated on your son. What is his name? I want to make a red heart for him. I am going to think of a design for a boy, not my usual flowers.


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You are so right, I'm sure when Conner gets older, I will be able to see the joy in his face when he gets to pick out his own bead, or one arrives in the mail especially for him. Right now that privilege is all mine!

His name is Conner and he just turned 2 in December. His next surgery in March 9th, and he'll have blood transfusions, and he gets a red bead for that, so a red heart would be perfect. It is hard to find hearts without flowers or birds on them, huh?

He is the most good-natured and easy-going child I've seen. He's always happy, except when recovering from surgery or anesthesia. He loves people, and even when the nurses or docs have to do something painful, as soon as it's over and he's calm, he is their best friend again. I love him so much, he is just amazing.

We have a CarePage, at
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you do have to create an account, but they won't spam you, and it's free. I post there about his health, photos, etc. If anyone wants to read our story from the beginning, it's all there.

I know most people think the BOC program is only for cancer patients, and I actually found out quite by accident that it is for cardiac patients also. I think that's great, and has allowed me some great stress relieving time, organizing them, stringing them, and finding certain beads that I want for them.

Beads of Courage is an amazing program, and Jean and Christy and Robert are all amazing people, dedicated to making a difference for those children who are not so fortunate to enjoy good health. In a secondary way, it also makes a difference for us parents, also. Sometimes, when you are struggling with another surgery, hospitalization, or health setback, you feel alone, and like your child doesn't really matter to anyone except you, because everyone else continues on with their days, while yours may have come to a grinding halt, like running into a brick wall. Seeing the love and attention that goes into those beads makes a difference, it seriously does.

Seeing all those beads means that people are thinking about Conner, maybe in an abstract way, they don't actually KNOW him, but someone said "Maybe there is a child out there that will "earn" this bead. Maybe it will make them smile, or maybe make that procedure a little less hard, because he'll get to pick a bead afterwards, and maybe be exactly what he wanted."

I've sent Robert a request for the beads that I'm imagining in my head, and maybe he can find someone that can create them. Once I get everything the way I want it, I'd love to take some pics and post them here, so everyone can see a working strand, that's actually being used, and see what their combined efforts have created for a special little boy, and his mommy.

I told Robert in my e-mail, I am SO not an artsy/crafty person, but since June when I got his first beads, I'm bead crazy, always searching for the perfect bead, and designing them in my head. I scour Etsy and Ebay, but usually can't find exactly what I'm looking for. Christina Burkhart did make a special bead for us, to represent the day he was diagnosed, and our whole universe changed.


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Here is Conner at 17 months old, with his beads as of that time


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Thanks, Erose, and others, for taking an interest in our story, and please feel free to contact me for anything. I had to quit my job to take care of Conner, and because of germs, have very little contact with anyone outside of family except for online. I really didn't mean to turn this into a novel, but I guess that happens sometimes.....

Tamara
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Old 2010-02-22, 3:19am
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Hello Tamara,

Please dont EVER feel like you are intruding here, or that you are sending us a novel... maybe we want a novel eh? You will find this forum to be one of the kindest groups of people on the planet. we take care of each other, and you are MOST welcome here. Personally I think you sharing your story helps us and encourages us to work harder. Hopefully it also helps you to express yourself, feel connected and loved, and not so alone. I know that for me at least, it helps me to feel more connected to the BOC program, and I will certainly add Conner to a prayer chain that I am part of, and pray for his recovery.

Many blessing to you today, and I bet if you posted here exactly what you want in beads, you will be flooded with them.

Candice
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Old 2010-02-22, 7:39am
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Oh migosh! What a handsome young man. I had other plans today but now all I want to do is go back to my torch and make more beads for BOC. I will include you and Connor in my thoughts and prayers from this day on, Tamara. My goal today will be to make more beads for boys. Yes, keep us up to date on Connor's progress.
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Old 2010-02-22, 7:55am
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Thank you so much for your wonderful story Tamara. Conner is such a cutie and so brave. I have never made beads for the BOC program but I am starting today. My first bead will be a red heart.
Your story has really touched me as a mom of 2 young boys, I cannot even imagine what you must be going through. Please feel free to post here as often as you want.
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Old 2010-02-23, 7:39am
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Thank you for coming here and sharing yours and Conner's story Tamara! He's adorable! I hope that more parents and families do the same.

As many have said, it's a gift for us to be able to use our talents in a meaningful way. Hearing real-life stories and feedback firsthand is a blessing too. Just like you don't have much contact with the outside world these days, we don't often get to meet the kids and families that our beads touch.

Thank you!!! And best wishes and prayers for speedy recoveries and good health throughout everything that you and Conner experience.
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