It Takes A Village

The last few weeks have been a whirlwind filled with some of my favorite weeks of the year. After an almost normal Halloween of trick or treating through crowded streets filled with laughter and delight, we went quickly into my son's Birthday festivities. My brother surprised him by flying in from California to join us for the weekend bringing much needed laughter and play to us all. We managed to have a seemingly normal family Birthday dinner and an outdoor Birthday party with friends later in the weekend. These moments were joyful and healing and provided us with a much needed pause on our daily stress of rare diseases, pandemics and vaccines. I tried to stay present and in the moment relishing seeing our son so happy and excited as we somehow celebrated year eight!

I guess in all the chaos and fun I forgot a crash would follow and this weekend it arrived. I have spent the weekend either in the kitchen or on the couch and mostly the couch as my body said- enough is enough. As I now digest everything I try to make sense of how time can pass by so quickly and yet remind myself of the many hurdles it has taken us to get to eight years and what a true blessing it is.

Eight years ago is when my son was born but it is also when I finally was given my diagnosis and I began my very steep uphill climb to heal. As I exchanged texts with our mast cell physician on my sons Birthday we both marveled at the journey it has been for us both. And then she said to me, what she always says to me, “it takes a village” and this year her words have never felt truer. The overwhelming emotion I feel from the last few weeks is gratitude for those in our amazingly supportive “village” who truly see us- who see us as more than our diseases, but who are also thoughtful and considerate of our limitations because of them. What a gift this is.

I know too many in my mast cell community who are afraid to share their reality with family, friends and co-workers. And worse when they do they are not met with understanding or compassion.

I remember early in my diagnosis still in disbelief of what my new reality was and struggling with how to share my invisible illness that flipped my life upside down. I recently happened upon an email I wrote to my closest friends just after receiving my diagnosis while I was my sickest self eight years ago this month. I wanted them to understand my reality at that time - that looked so vastly different than what they used to know. I even prefaced by saying that "I was struggling with knowing how much to share about my rare disease and my journey because it all seemed so impossible for even me to believe." It felt scary to be so open and vulnerable.

At the time it felt only safe to share with those close friends but I have since learned the tremendous value of being open about my diseases with others-this blog obviously proves this. But I have also learned how to do this for my son. Each year at the start of school I share a letter with the parents in his class that explains his diseases and how they may impact things like the food he eats or environments he can be around. Each year when I update the letter I still get a little hesitant, similarly feeling unsure of how others may react. But over and over again, I have seen that in being open and honest we help normalize our rare version of normal for everyone else. They take cues from our own comfort with our diseases and the accommodations we must make to our lives because of them.

I am so glad our son is similarly learning he does not need to be afraid to share his day to day reality with his own village. I know he too feels supported and safe by the many family, friends, teachers, physicians and nurses who walk with us on this journey.

And while there have been people who have chosen not to come along for the ride with us, many more have stood by us and even more have hopped on along the way further building our “village.” To all of you, I say thank you. As I think about the last 8 years, I am overwhelmed by how many helped to get us this far and I am so grateful to know that no matter what the next year brings “our village” will be with us - for the highs and the lows and everything in between.