“When I stand before God in the end of my life, I would hope that I would not have a single bit of talent left, and could say, “I used everything you gave me.” Erma Bombeck
Ever since I stared blogging almost 3 years ago, I have kept a list. Religiously adding titles for potential posts, things that inspired me for one reason or another. Everything from seeing a beautiful sunset, to my deepest struggles and the desire to try to find a reason and grounding somewhere in those challenges through the ability to find a moment of gratitude. While I don’t write as much these days, the list grows and continues to remind me of each of those fleeting moments of gratitude.
Last week, I added a new title. It was called “what would you do?” Given it’s now a TV show, perhaps it’s almost cliche, but you see it’s not; because it begs the answers to the hardest of questions. When asked to participate. to step up, to step in, to push yourself outside of your comfort zone or to interrupt your regularly scheduled program to be present and to recognize your moment to make a difference, what do you do?
For me this is a much larger, more persistent, ever-present boulder to carry. A boulder of knowing I am probably not living up to my full potential. A boulder of not only feeling like I can do more, should do more and the world of possibility is at my fingertips, and yet I get lost or more specifically lose myself in the details. I have a purpose, I see it rise up in meetings with doctors, insurance companies, the school district, teacher meetings, therapist meetings and anything and everything related to the advocacy for Emma, but for some reason I hide from the thing I want most, the difference I can make through what I am capable of for Emma in fundraising for a cure. The cure that is so close, yet just out of reach.
I can do it, I know I can, I just have to pull the trigger, to prioritize it above everything else. To not allow myself to get refocused. To use the time I might spend typing a blog post, reading a book, or catching up on episodes of Nashville and Scandal, for a more purposeful 30 min of time. To just get the format finalized and send the first email. I can do it. I will do do it. I will give myself the public deadline of 2 weeks from today.
So that’s what I will do, I will step into what possible and into that of which I am capable. Perhaps it’s the fear that it won’t succeed or that it won’t work, but then success in this case can be measured in everything single cent raised, every person that learns about Angelman Syndrome, every single moment that the people that have been on this journey with us and the new ones that join spend with us. Success will look like Emma’s progress, micro things the untrained eye might never notice. The ability to focus just 2 minutes longer on a task, the ability to turn her body to rotate herself into a seat, the ability to hold onto a fork beyond one bite and to not reach out to swap the food or even the plate off the table. So even if it’s not a smashing success that sweeps the nation like the ALS Challenge, it’s success for Emma, the other Angels, and for a potential cure.
So today, the moment is to not believe in the branch but to trust my wings, because even on a blustery day these wings will take us some distance. I am not an angel like my E, but I am one strong bird and I can do this…just need a 2 weeks and some faith and maybe a little reassurance that whatever it is, it will be enough for my E. That I can live up to her needs, her amazing journey and the faith that she tells me everyday through her loving eyes that she has in me to be her mama and the one that will fight for her future, her security and all that is possible in her life with or without a cure. So now, as of today, when I ask myself “what will you do?” the answer will be “everything.”
I hope that no matter what you challenge or that which you do not take on, seems a touch more surmountable and accessible today to make today ‘newfavoritday.’
Thank you for sticking with me!
4 thoughts on “What would you do? A question worth asking Everytime.”
I hope that one day there will be full cure for Emma 🙂
Loved your post, it meant a lot for me on a personal level. You are a brave person.
DO IT GIRL!!! How can we help!?
Good to hear from you, Shannon, and I guarantee you that YOU can do this! You have the resources and the support to bring this to the forefront. So, take flight, my friend! XOXO-Kasey
Shannon first off we must schedule lunch and catch up.
Be kind to yourself your children are young and there is only so much you can do while balancing their needs (special or not), a career, being a wife, daughter, sister, friend, advocate. I learned this the hard way through a health crisis while in L.A.. When you’re path is ready a light will show itself to you and it will all feel right. Until then continue to care for yourself with those guilty pleasures (scandel, a good book..etc).
The boys are finally at a place just recently (A almost 12 and R 7) that I can focus on my dream. My dream of building a profit & non-profit firm. I would have never thought this was possible. There are days though for example after the last couple months taking A for medical procedures, tests and balancing his anxiety and needs that I thought ‘wow this doesn’t slow down’ but sometimes it does for a moment and take the moment when it comes. Then when you need to refocus other areas of your life do that.
What I have found is that as an over achiever (you are as well) I want to do everything with a plan, finesse, completion, in a cycle. I have to now work smarter and differently and it’s been a huge personal shift for me. But I’m learning and I see this happening for you also. Trust me girl and take the moments as they come in their unique fashion…Remember the ‘soul sister’ post….:)