|Jacob, Brie and I strung all of Jacob's |
beautiful beads together.....
just the way
Jacob wanted them.
|Jacob said as he gets new beads he will change the patterns up.|
|Jacob is so very proud of |
|These are the beads we|
have given Brie so far.
A few weeks ago the big kids came home and told me about this really neat program for children with serious illnesses called Beads of Courage. Jacob expressed that he wanted to participate in it and went on and on talking about it for days. After some online research, a few calls, several emails, and some Facebook time, I was able to sign Jacob up to participate. It is a truly special program and I wanted to share it with you.
As the web site states, every bead tells a story of strength, honor and hope. "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."
Since Jacob's medical journey began so long ago, it took me a while to write down his initial bead request. It brought back a lot of memories, both of hurt and of triumph. In a small way I was forced to relive some memories that I have put away and it turned out to be therapeutic, reminding me of how far Jacob has come, how many odds he has already beaten, and how so very strong and courageous he is. Jacob's string of beads is beautiful. He received star beads for each surgery, white beads for chemo and immunizations and blue beads for his infusions to date and clinic appointments. Jacob was sent black beads for port accesses, IV starts and blood draws and Magenta beads for his trips to the ER. His yellow beads are for nights spent in the hospital and square heart beads for the nights he has spent in PICU. His light green beads are for the MRIs, CTs, EEGs, EMG, audiograms, ABR testings and heart echos he has had. Rainbow beads were given to Jacob for his years of therapy and the lime beads are for time spent on bed rest or being out of school due to his disease. For most of the beads for his past medical history, I underestimated Jacob's request. For example, regarding his MRIs and clinic appointments, I only asked for one bead for each year of Jacob's life in treatment. He has had so many over the years I felt like it was more reasonable to only count the years since the onset of his NF2 instead of going back and requesting a bead for each individual one. Not to mention trying to calculate a bead for each OT, PT, Speech or CS therapy for the last eleven years would’ve been difficult to say the least! Jacob used to do all four, each twice a week! From here forward Jacob will get a bead for each individual step in his journey.
I never thought my almost-fifteen-year-old son would love something like beautiful beads, but ask Jacob about his beads and watch him light up! He will start to talk about his up coming appointments and relate them to receiving a new bead. I think it is very special to be able to associate something nice with not-so-nice experiences.
Beads of Courage also has a special program just for siblings to acknowledge the challenges they face when having a brother or sister who is fighting an illness. Brie got her own collection of special beads along with a colorful program guide as symbols of support and encouragement. Brie's beads are beautiful too! I will give her more as she continues to walk with Jacob through his journey. Our Beads of Courage representative suggested we get Gavin his set around the age of three. Gavin needs a gold metal for all the happiness and positive distraction he has given us over the last two years during hard times. At age two, he has spent more hours in hospitals and doctor offices than most people do in their lifetime. All three of my children are troopers. Reminds me of the Children's Brain Tumor Foundation's "Tumor Troopers" sticker we proudly have on the back of our van, but that's for another blog post.
Thank you so much Beads of Courage!!
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.” Mary Anne Radmacher
Check out the web site if you have time. It is really a wonderful organization.
They sell t- shirts and beads and other items that support their program.
Thanks for reading!