Hey Baby Girl! I played with your beads tonight. I love to take them out and look at them and hold them in my hands and just feel them. I remember when the nurses decided to set you up on the Beads of Courage Program. You were so excited, and so were Grandma and I. The beads became something to look forward after your hospital visits and stays, not only for you but really for our whole family. You loved to show them off and look at them and just play with them. You were so proud of your beads, almost as proud as your Daddy and I are of you. Such a brave girl.
I wear 6 of your beads around my neck every day, it’s a small piece of you. I wear the cupcake bead, the heart bead, a red, yellow, black, and purple bead. The Cupcake you earned when you went to the OR all by yourself, you had to have a special eye exam under anesthesia. The Heart bead is the parent bead, we actually got two of those, one for Mama and one for Daddy. You didn’t get to see Daddy’s, its purple baby girl! The red beads are for every time you received a blood product. You received IVIG multiple times and platelets. Yellow beads are for overnight stays in the hospital, you earned over 10 of those in a short two months. Black beads are for pokes – blood work and IV starts were the majority of what you earned black beads for. I know that your count of black beads was well over 45. So many pokes. Purple Beads are for IV infusions. You earned a lot of those as well as all of your treatments were received through a IV line. Red, Purple, Yellow and Black were the main colors of beads that you earned.
You earned so many different, really cool beads. You earned 5 Fish Beads, for travelling to Saskatoon for your care. You earned multiple fancy beads for being discharged from the hospital (I think more than 10). You earned a few really neat special ones for acts of courage, the cupcake was one of those. You earned a flowery bead just for earning 100 beads! That is one you also didn’t get to see. It’s pretty baby! You earned beads of all different colors for all different kinds of things, suture removal, respiratory support, tests and scans, procedures, emergency situations, emergency transport. These beads are beautiful, and such an amazing support for young children and families.
Throughout our journey we were supported by many amazing women in our lives. After you passed I came up with an amazing idea to keep your memory alive. I had necklaces made for some of these amazing women. Your Grandma Cindy got a Fishy Bead, your “Stick” Bead (discharge bead) and a red, yellow, purple, and black bead. Your Nana got a Fishy Bead, a discharge bead and a red, yellow, purple, and black bead. Your Aunty Jack got a Fishy, Aunty Chanda got a discharge bead, Aunty Holly got a discharge bead, Emma got a Fishy, Amie a purple star. I also am getting necklaces ready for a few more people. Your Daddy is going to get a key chain with his Purple Heart, a red, black, purple, and pink bead. I plan to save his for Father’s Day. This makes Mama’s heart happy, giving back to the people who loved us through it, and still are. Sharing the beauty that came from a fairly ugly journey.
After you passed we went back to RUH to see your Social Worker one last time. To get the beads you earned on that last day, and the castings they took of your hand and foot. Katie had a very special bead to give us. It is a beautiful Butterfly. The Butterfly is huge, pink, purple and blue. It is used to tie together the string of beads, the circle of life. I like to call it our “Goodbye” bead. It’s so beautiful, fitting for your beautiful little soul. I’m sure it would have been your favorite one of all.
You are my favorite one of all!
Love and Kisses,