Today is Mardi Gras… images of parades, King Cakes, wild parties and those ubiquitous beads are all around. For me, the Mardi Gras beads bring to mind another set of beads… Beads of Courage. Until Mikey got sick, I had no idea Beads of Courage existed. But they do. And they mean so much to children experiencing multiple hospital stays during a health challenge, like cancer.
Mikey took such pride in his beads. The best day of each hospital stay was when the Child Life Specialist (read angel), would enter our room with her big box of beads. She would cozy up on the bed with Michael and together they would open her treasure chest of beads. Some of these beads were beautiful works of art donated by artists from around the country, others are made from clay or plastic. After staring at the gray boring walls of a hospital room for days on end, the box of beads was a thing of sheer magic. All those colors, shapes, sizes and meaning. Yes, meaning. Each color bead represents a different procedure or milestone in a child’s journey, for example:
Glow in the dark yellow for radiation treatment (pretty funny)
White for chemo (nothing funny here)
Black for pokes (blood draws) Mikey had SOOOOOO many of these
Light green for tests/scans
You get the picture.
You get the picture.
So, they’d sit on his bed and go through his hospital stay: got an IV (1 poke, i.e. needle stick), had chemo, threw up twice (yes there are barf beads), slept over 3 nights (yellow beads), blood transfusion (you guessed it… red bead!), and so on. By the end of the conversation, Michael would have a big pile of beads on the tray table and would be asking for his bead “necklace” (A giant would have to wear it to qualify as a necklace… it was really really long! The picture is just one of 3 remaining necklaces.) The angel would leave, and we would have a fun hour or so deciding, should we restring the beads, or just add the new ones to the end, or maybe make a new pattern, etc…. and there would be smiles and fun amidst the beeps of the IV pump and the swooshing sound of the blood pressure cuff.
At home, Michael loved showing his friends his beads when they visited. He’d explain the story behind the special artsy beads. Favorites being the puppy bead for Charlie, his “make-a-wish” puppy our family adopted when Michael was diagnosed, the outer-space looking bead he got for being on crutches while in treatment, etc. He loved the shocked look on people’s faces when he showed them all his poke beads, over 170 of them!
The beads tell the story of his cancer journey in living color. When he was down, he could hold them, look at them and remind himself just how far he’d come, how much he’d endured, how strong he really was. And he’d draw strength from this visible reminder of all he had survived.
So as his life wound down, he knew the perfect gift to give. He would pass his beads to those who would need strength to continue living in a world without him. He divided up his beads into smaller strings and delivered them to friends and family.
I have ten poke beads I carry with me. I like to think they give me a “poke” from Michael. Depending on my mood it might be a poke in the ribs… a wise-guy kinda poke, or if I’m scared, a “Hey mom, you can do this” poke. The “poke” can be whatever I need in the moment.
Patti
Comments 10
Mary Kay Slowikowski
Thanks for the message about Mikey’s beads of courage. It was so touching. It is such a gift that the beads live on through others. Patti, your works are blessed. It is my gift to know you and Al.
Love, Mary Kay
Patti Gustafson
Thanks Mary Kay,
You are a gift to us as well. Thank you for caring about these children and our mission. It really helps.
Dianne Dame
Dear friend.
Thank you so much for sharing the beads of courage story, it was something I wasn’t aware of. You and Al never cease to inspire me and others with your heart felt words. I’m so glad you have the beads to comfort you when needed and give you a poke when needed. Love you!
Dianne
Patti Gustafson
Love you back! I’m glad I got to “teach” YOU for a change!
Patti
Marianne Schnabel
Dear Patti and Al, Your courage and Mikey’s spirit are a beacon of hope to many of us. God bless and sustain you and the swifty foundation. 💕💕
Marianne Schnabel
Peggy McNicholas
Patti, It is sooooo inspiring to read the Swifty updates and what you, your family, the Swifty board, and the medical professionals have accomplished as part of Michael’s legacy. Your wonderful works are helping so many children and their families to have hope in finding a cure for pediatric cancer.
Love,
Peggy
Marlene Ustian
Patti and Al, You both are the most incredible parents, and I admire how you have kept Mikey’s memory alive in such amazing ways. You’re also great communicators, sharing your heartfelt stories, that touch us all. I have always felt that the Swifty Foundation is the best possible charity to donate to, because of the work that you both do.
With love,
Marlene
Nancy Azzaro
Such a loving and heartwarming story. It is always a joy to hear Mikey stories, they always put a smile on my face. I think of him a lot lately as I am walking Nala, in a couple feet of snow, and how much Mikey loved the snow and sledding on the golf course. I can see Mikey making snow angels on the front lawn. He will be in our hearts forever.
Love,
Nancy
Susan Cisek
Patti, I had no idea about these beads of courage! What a wonderful idea! It was so nice to read about what they meant to Michael! The Swifty Foundation is so amazing!
You bless the lives of so families through your foundation!
Is it possible to purchase beads for the patients?
May God continue to bless your life!
Sue
Tommy
Dear Patti,
I am made stronger reading about Mikey’s beads of courage. God’s Love shines so perfectly and clearly in the photo and story. Thank you and thank Mikey for bringing that “poke” to us, it transforms the World!
Tommy