Looking Forward

As the final summer days wind down I am left with the usual feelings of hopeful anticipation for Fall- for a new school year, new experiences and moments that await us.

I am noticing a subtle shift in myself as I let myself make plans again more freely. It’s sort of the same feeling I had just before the pandemic started, that I could figure out how to travel and how to live outside my bubble. Finally getting the courage to think beyond tomorrow and into the future- weeks or months from now.

This summer has felt in many ways victorious with family visits, our beach vacation not ending in sickness, happy days at camp for our son and celebrating turning 40. All reminders of how important it is to have shared moments of joy with our family and friends and how truly healing these times are.

Naturally as I enter a new decade it is hard not to take stock of where I am at now and what I have worked through. It is hard for me to see progress daily living in my body but I may finally feel a shift. With my surgery being over six months ago my body is finding its new rhythm, healing everyday - and making some positive movement forward.

I had an appointment with my mast cell doctor a few weeks ago and I shared this sentiment that it is hard for me to see progress. And she said, “think about how far you’ve come - this is our 90th visit.” I couldn’t believe it - 90th visit!! We met almost 9 years ago and if each appointment were just one hour we’d have spent 3.75 days together working on healing - except our appointments many times were 3 hours long. Given the trials, appointments, infusions I can easily say one full week, 24/7 for 7 days has been spent with this one doctor alone slowly but surely working on healing.

I had tears well up as emotion took over and a mix of feelings overcame me, disbelief that it had been so long since my rare disease journey began, grief for the many losses these diseases have brought to my life but also immense gratitude for her, for having a guide and advocate in my healing for so many years and also for my entire support network I have now built since that first day we met.

It is true though, when I do think back to who I was then and where I am today there is progress. There are still big hurdles for me to conquer, expanding my diet, weaning lower or off of steroids, raising certain vitamin levels, and strengthening weakness still caused by my surgery. But I do feel hopeful some of these are possible. I just know it may take months or years and not days or weeks and that it will mean I may at times go backwards to go forward. But if I have learned anything this last decade it is to have patience for my body, a trait I do not come by naturally. My runway is endless for healing and while I know my life will never be free of these diseases finding stability and improved quality of life are forever my goals no matter how long it may take.

I could not have imagined that my last decade would but such a crazy ride, living my very best and very worst moments of life and yet even still I made it through. As I look to my future I know I carry with me the lessons learned, a hope for healing and knowledge that above all else I am supported and loved which is the greatest gift of all.

So as summer fades away and fall arrives I take comfort in knowing that the seasons will continue to go round and round and with them will come highs and lows and I am blessed to be along for the ride.