"Hope...is not a feeling; it is something that you do." ~Katherine Paterson, American Writer
My children are both sick this week. What started as a crushing headache, lethargy and a sore throat developed into strep throat for Tiny Dancer. And Rocket? Well, what looked like the telltale strep balloon parade in the back of his thoat is nothing more than a nasty cold. They are doing fine, thank you very much, and will recover soon.
It is times like these, trying my patience and make me lose a little sleep due to the hacking and sniffling, that make me thankful that the worst health problems for my children can be cured by the occasional bubble-gum pink amoxicillin or Sudafed decongestant liquid or chewable Tylenol along with some rest and plenty of fluids.
It also makes me think about worse case scenarios and how I would deal with that.
What if my child were the recipient of a gene so rare that there was no known cure and few people even knew how to treat them?
What if my child suffered daily from a condition or almost worse, the social stigma attached with having something seem not quite right about them?
If my child had a rare disease, there is a very real statistic that 30% of all children diagnosed with these genetic disorders could die before they reach the age of five. How would I cope with that?
I have been doubly blessed with two relatively healthy kids, and I have often wondered how that happens. The right combination of heredity with an environment that is safe, I suppose. Or maybe just dumb luck. But for those that deal with a rare disease daily, I can only imagine the struggles that they go through. And even though I may not be able to sympathize with this situation because I have not experienced it myself, I can empathize and offer my support.
Enter the Global Genes Project. This advocacy group aims to raise awareness and provide support to those families that are dealing with rare diseases. They are connected to the Children's Rare Disease Network that is working to educate the public and support the families caring for a child with a rare disease.
I am delighted to lend my talents to the Global Genes Project and their 7,000 Bracelets for Hope campaign. I am donating a bracelet called 'Tamarack Mist' to the project with the hope that this will bring some peace to a mother who is caring for her child. This bracelet was inspired by a painting by local artist Ann Waisbrot titled 'After the Rain' that was part of my 'Inspired by..." Gallery Q exhibit from last summer. And I think it is fitting for this project to remember that rainbows follow rain, and there are sunnier skies ahead. That is the embodiment of hope to me.
'Tamarack Mist' features a pewter button from D'Arsie Manzella of Mamacita Beadworks fashioned into a hook clasp. Glass beads in bright blue skies and soft gray clouds fill one side, while the other highlights three polymer clay beads that were made just for me inspired by the painting. These clay beads have swirling colors of the soft sunset light after the rain are by Organic Odysseys.
I will write a note to this mother. I will tell her that when she wears this bracelet, I want her to know that I
am thinking of her. As this bracelet encircles her wrist, I want her to feel me enveloping her in love and light. I want her to know that as a mother I share her concerns and her fears and her hopes for her child, for all children. I want her to know that I will continue to send my positive thoughts to her across time and distance. It might not always be easy to watch this loved one go through a life that is less than she hoped, but there is comfort in the knowledge that others are walking your path and solace that there are those in the world who care, even if you have never met.
This post is part of a blog hop that Lori Anderson coordinated of jewelry designers who want to lend their talents to the 7,000 Bracelets for Hope. Please go to her post to find the rest of the participants and read more of their stories of hope. Or better yet, go to the Global Genes Project and find out how you can help.