7,000 bracelets of hope

Most days I don't really give much thought to checking the mail, but every now and then there is a sweet unexpected surprise among the anticipated bills and weekly advertisements. Yes, postal mail. It takes time to address an envelope and requires a moment of thought for contents which makes it all that much more special. We live in an older neighborhood where mailboxes hang on the front porch and letter carriers actually walk from door to door. It's charming and neighborly and today, delightful!

   

A few months ago I registered for the Global Genes Project 7,000 bracelets of hope campaign. It was World Wide Rare Disease Day and I thought the bracelets were a brilliant idea for raising awareness of rare diseases and spreading hope.

Hope, as involved as finding a cure, or as simple as the warm and fuzzies, to know someone is thinking about families touched by rare disease. Today it appeared in the mail, a little reminder that we are not alone. An unexpected surprise with impeccable timing.




A special thank you to the thoughtful woman who made and donated the bracelet I received.

It's beautiful and I will wear it with pride.

Conference Abridged

I may be physically home, but my brain is still in Boston. How to summarize an experience so full of raw emotion, acceptance, compassion? A utopian assembly where strangers instantly become family and everyone shares a common purpose no matter their station. Parents, affected children, healthy siblings, carriers, affected adults, spouses, grandparents, researchers, doctors, nurses, caregivers, friends, the newly diagnosed, and the veterans all together under one roof lending support, swapping stories, sharing tips, listening, learning, laughing, crying.

I feel like this is the one place where I can be known just as Cooper's mom, which is strangely comforting. Here, it's okay to introduce myself as Cooper's mom even though he has passed away. No one thinks it's weird, no explanation required, no need to brace myself for a reaction. I shared this thought with my bestest friend {Cooper's Godmother} and appreciated her response. She said something along the lines of "I get it, at home you wear many different hats and there you just wear one. There you are first and foremost Cooper's mom." David and I met a couple our first year who claimed to attend annual conference instead of therapy or counseling back home. It's taken me a few years to fully absorb that impact of that statement, and yes, it is that meaningful.







Yes, my name tag does say OCD. The self-descriptive ribbons made me laugh and this one seemed particularly fitting, so why not!

I was thankful for the opportunity to participate in several studies this year; (1) to better available carrier testing, (2) to identify potential biomarkers, and (3) a natural history. The biomarkers and natural history study will both be used to solidify metrics for use in the upcoming chaperone therapy clinical trial. The notion that by recounting our experience, and providing a single drop of blood another family might one day (soon) have a viable treatment option, it's invaluable. For me, participation enhances purpose, knowing we might have a some small impact and the ability to affect change. Empowering stuff.

This year I was asked to share a bit of our experience in the symptom management session and a more complete account as part of an NTSAD "Philosophy of Care" video. It was humbling to have been asked and I was honored to share. The idea behind the video being to "discuss experiences finding, developing their philosophy of care showing a range of approaches and how philosophy evolves as the disease progresses." The end result, available media of personal accounts for newly diagnosed families who may be interested in knowing what worked for others and provide another source from which to gather information. As I reviewed the interview template outlining topics and questions to be covered, I was impressed with the thoughtfully inclusive progressive structure. All of these questions and concerns, the same ones David and I waded through with Cooper. I jotted down some key points so as not to loose train of thought, but once in front of the camera I was asked to put all notes aside to avoid any crinkling sounds which may be picked up by the mic. In hindsight, I should have been prepared to respond to general topics instead of pointed questions. I didn't feel like my answers alone were anywhere near complete and wished David could have been there to help make it so. I may revisit the script and create a blog post for each topic providing more complete, concise responses, sans nervous fidgeting or inappropriate smiling.

Just Like Summer Camp

Our first year at conference we were able to attend as a family, David, Cooper and I. We were a bit apprehensive, nervous to meet the other families, yet wanting to learn every angle and possibility of what we could do for our son. That first conference was like jumping into uncharted waters feet first surrounded by lifeguards at the ready. We are eternally grateful for support and insight provided by NTSAD staff, parents, and presenters. It was overwhelming to say the least, but more like learning a foreign language though emersion, actually visiting the foreign country rather than taking the 16 week course from an instructor who's never walked the streets. Still, I am enlightened everyday by NTSAD family checking in on each other, sending words of encouragement, and sharing information. 

NTSAD Family Conference 2009
Boston MA

Last year we did not plan on going to conference at all. It had only been 6 months since Cooper passed away, and we couldn't bear the thought of attending without him. I knew I would be a mess with every hug, touch or smile and the commemoration ceremony, unfathomable. I was afraid to fall apart in front of everyone, afraid I wouldn't know what to do with myself. Though the day before conference I quite literally felt knots in my stomach knowing that I may regret missing out completely. We mustered together a last minute flight to Florida making it possible for me to attend one of the four momentous days. As feared, I did fall apart, however; I was not alone. I was engulfed by a mutual love and understanding that made it more than okay. I was so glad to have been there even if only for 24 hours. No regrets. 



NTSAD Family Conference 2010
St. Petersburg FL



Needless to say I'm hooked, I'm in. Come Thursday I will be Boston bound for the the annual NTSAD family conference; anxious to hug old friends and connect with new ones, to celebrate the lives our children and remember our angels. Here, friends easily pick up where they left off as if there is no time or distance between them, forever tied together through experiences. Just like summer camp, only we are all too aware of time. It ticks by with each new diagnosis and is marked with every pair of wings, our allied diseases both progressive and fatal. It has been said many times that this is a club no one every wants to be a part of, yet we're all so thankful it's here. This year I am eager to hear news of research advancements, clinging to the hope that time can soon be redefined. No longer a sponge soaked newbie or stumbling through the thick fog of grief, ready for conference to unfold.