The Truest Gift
Tomorrow is my Mom's birthday- another stop on my emotional ride through May. I think often about our deep connectedness- of course as mother and daughter but also as rare disease warriors. While we both had our ups and downs with health issues for years in mysterious ways - it was not until 2013 when the ground fell out from under us. We had already spent the prior two years trying to figure out what was wrong with us and why we continued to slowly worsen. In 2011, I so clearly remember saying to my mom, after a trip to the ER, "If we don’t figure this out we’ll have nothing left to eat in a year.” I suppose my timing was off slightly - it was actually two years when both of our worlds crumbled within eight weeks of each other. I was 17 weeks pregnant and was left with eating only three foods.
We kicked into high gear knowing that finding a diagnosis and physician to care for us was our only chance at surviving. Amazingly after years of actively searching and a lifetime of not knowing, the stars aligned as our research led us to Mast Cell Activation Syndrome- and to the name of our physician who miraculously practiced just outside NYC. While our relief was cause for celebration it was clear that our normal life was never to be seen again as our mast cells went on the attack of anything in their path.
For the next three years my Mom and I rode our rare disease rollercoasters together. Celebrating victories and lifting each other up (sometimes literally) on the harder days. We could talk each other through our reactions- even from afar-when our minds were not thinking clearly-reminding each other what meds to inject and when it was time to go to the ER. We could keep each other calm when we each at varying times looked death in the eyes but also and most importantly be joyful together through it all- to laugh and play and delight in our time together and with our family. Having a rare disease is scary -it is isolating -and it feels like it takes so much away from you. But as my Mom and I always said- "at least we had each other.” Our connection and bond - gave us both strength and courage to face each new challenge and new day. Even when not together - we remained connected -In the obvious ways like texts and phone calls but also in small ways -like socks!
We both shared a love of silly socks - and often times had matching socks. In days that we were faced with our hardest moments, we both would be sure to wear our special matching socks, feeling that in some way these socks were our hidden superpowers that would carry us through whatever was thrown at us. Of course that is until even our combined superpowers could not save her. I was left with a broken-heart over the loss of not just my Mother and friend but of realizing that I was left to battle my mast cells alone.
In 2017, as my Mom's first birthday since she died approached, I spent hours thinking about how I could celebrate my love for her and the magic she taught us to look for in our everyday life. I thought often of our socks and the true power they had -that even in our hardest moments they connected us - providing us much needed comfort and support. I realized that I could once again look to harness the power of socks to carry me through another impossibly hard day. And so I asked my own community to wear silly socks in my Mom’s honor on her birthday and to send me photos of their feet!
I never could have predicted what joy and comfort these sock pictures brought me both of knowing she was being celebrated but also reminding me how blessed I was to have such an incredible support system who I knew would never stop lifting me up in all of life's moments. While I could never replace my mom, I knew that I was not alone in my battle. What an amazing gift this was.
As I thought about this week's post, I was certain I would not share this most special and personal sock tradition on the blog. And yet, I realized that in this time- during a pandemic -perhaps everyone could benefit from a day of feeling connected-of wearing silly socks together-and making all of our days a little extra special and I expect even a little magical. So I invite you to join in my celebration of my Mother on her Birthday tomorrow, May 17th and if you would like I would love to see photos of your feet!
As you wear your socks- I hope that you feel the magic and joy of knowing we are all connected-on this day, in this most challenging time- lifting each other up and reminding ourselves of the truest gift of all, that we are not alone.
Editor’s Note: A collage of sock photos will be shared after Sunday for those who send in pictures of your feet! To share please email photos to ararenormal@gmail.com .
