My Wish

While my birthday will forever be bittersweet since my Mom died, I have learned that even with the emptiness I feel without her, I also feel tremendous gratitude and joy from the love and well wishes from my amazing community of friends and family that ensure I feel the magic of the day. From my son’s decorating, to a surprise socially distant visit from a dear friend, a family zoom- complete with blowing out my birthday candle on a blueberry - and countless well wishes and treats sent my way I felt so blessed to begin another year.

Of course, growing up birthdays were always celebrated but since my own rare diseases worsened, I like many in my rare disease community, realize turning a year older is truly a gift that in an instant can be taken away.  Birthdays now represent another year of fighting for better health, of hoping I made more progress forward than backwards and of figuring out how to live my fullest life even with my limitations. 

But it is also a moment of hope, knowing I get to make one wish, a wish my Mom and I shared while she too was alive, a wish for our lives back- for when we are healthy again. That if it came true would mean I could go to do whatever I want, with whomever I want, wherever I want, without having to pre-think it, measure it, or worry about what it will do to me. To not feel pain or discomfort or anxiety that accompanies this rare disease life. A wish truly to live freely again.

During the pandemic, I think often about how the entire world is suddenly living my reality and wishing my wish, for a pandemic free world, without having to be limited in what we do, who we see and where we go.  I do believe that wish will come true for the world, perhaps not tomorrow but not too long from now.  But I also know that it is very possible that my wish for my full recovery may never have an end. When the pandemic ends, my rare disease reality is still here.

In this very stressful time, as school plans are released and we face a new season - I hope everyone will appreciate this is a moment in time--but it is not your lifetime.  Unlike rare disease patients your wish will come true and you will all move on from this. 

So as another year around the sun begins-  I will keep fighting -keep celebrating the good moments and keep feeling grateful for the love and magic I am blessed to feel from so many family and friends not just on my birthday but everyday. And I will also remain hopeful as I continue to make my wish and blow out my candle...on my blueberry.