Notes From Supergirl

My Diary from the Trenches

The Fall

September6

Fall has always been my favorite time of year. I know that New Year’s is supposed to be the time to kick-start changes and start fresh, but for me, I’ve always felt that way about September. I suppose it’s because that’s when school starts and I’ve always looked at that as an opportunity to redefine myself, to refocus and dive into the year ahead. I got married in September, on the 22nd, the day of the Autumnal Equinox, specifically because I truly honor the start of this season. Yet, as I start this year, I’m fighting off the memory of the last two falls that haven’t been all I hoped they would be, to put it mildly. Last year was particularly hard because I had been full of optimism and was nearing what I thought would finally be the end of chemo and the beginning of freedom. My oldest was starting at a new school, with all new friends and new parents for me to meet. And my youngest was beginning his second year someplace he had always been happy. And then came October. There were so many disappointments and fears wrapped up into one little microscopic broken chromosome.

I have no interest whatsoever in dwelling on any of that now. I’m just trying to figure out how to silence the voices that whisper occasionally. While other parents carpool and take their kids to soccer practice without a second thought, for me it means everything. And because of that, it makes everyday meaningful but also stirs up worries about this being temporary. This IS the gift. Being able to drop my kids off, have lunch with a friend, go to my book club and work are things that I celebrate, everyday, all day long.

In the last couple of weeks, I’ve learned about a couple of people that have passed away who seemed to be doing well for a while and then had a recurrence of their disease. That, in combination with the PTSD-like feelings about the last two years, have brought on these unsettling feelings. What I’m focusing on is that just on the other side of October is December and the one-year anniversary of my transplant. I am so lucky to have gotten where I am today, not only to be alive but to be healthy, active and re-engaged in my life. Even those who have had successful outcomes have often dealt with more challenging months post-transplant than I have. And that is one of the tricks about being a “survivor.” My friend Jessica wrote a beautiful piece about how hard it is to feel like the lucky one when those around you are struggling. And as she so eloquently states, that is why we never stop fighting. We fight for the ones who can’t fight for themselves. We are all in this together. I hope I will be given the gift of a long, long life so that I can fight for them for as long as possible.

To lighten things up, I wanted to say an enormous thank you to a beautiful group of women I met over Labor Day weekend. I was ecstatic to be able to go to my cousin’s wedding in Boston. It was an amazing weekend and I had more fun at the wedding than I have had in a very long time. It was perfect. But one of the most special parts about it was that the night of the rehearsal dinner, I was introduced to several of my aunt’s friends who have been following my story from the beginning! I was so humbled after meeting the first friend and then one by one, more friends and family introduced themselves. I was really overwhelmed with emotion and an incredible sense of love. All of these women said that they feel like they know me, my family and my story so well after following the blog. I don’t think I really comprehended the reach that this is having until that moment. But what really touched me was they all said that they had been praying for me. To know that these amazing women who had never met me had the kindness in their heart to follow me and pray for me and my family left me speechless. So to my incredible posse from Boston, THANK YOU!!!! I am so grateful to have gotten to meet you and I look forward to seeing you again!

Lastly, I got a haircut – the first one in 2 1/2 years! I don’t think too many other people would even notice but, in a weird way, it felt like a step forward. I cut it so that it would have a little more style and help it grow out more nicely. I guess I’ve always hesitated to cut it in the past because it felt temporary. As silly as this sounds, cutting it now feels like I “own” this hair now. I know how silly it sounds, but it was very cathartic! Once again, it’s the little things :)

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