It’s been a while. I guess you could say that we’ve been busy kicking the shit out of option b, or at least trying. Covid sure made that harder. Life was hard back when everything was normal, but we had support in the form of school that allowed us enough margin for some adventures and rest. This last year has been another level of hard without that, but that isn’t what I want to write about today.
I want to go back to option a. October 2005. There was a moment there when everything felt right in the world. My mom had come to visit, we went for lunch at the Ritz in Half Moon Bay where I had the most incredible bowl of pumpkin soup of my life. The next day Claire was born at Stanford with high apgar scores and the brightest blue eyes. She had 10 fingers and 10 toes and presented as the stereotypical healthy first born I had dreamed of.
Fact of the matter is that despite everything feeling right at that moment, option a was really never on the table. I hadn’t yet gotten the courage to go to therapy and work through the shit from my childhood. Jared was busy with the career of his dreams. On paper it looked perfect, but it wasn’t. We faked it for a year like we all do. Then Claire stopped hitting milestones, we started spending a lot more time at Stanford, our home revolved around the early intervention program and eventually she was diagnosed with Rett Syndrome.
That is when we admitted we needed to go to option b. The dream was gone. We would never be the cute couple watching their baby girl run home from preschool with the art that she made. We would be the parents that learned to advocate and grieve early. We would have to adapt everything and learn to let others help because it was just too much to manage alone.
If I’m honest, option b was always the better option. Hardship and suffering made space for beauty and joy that could have never fit into option a. We connected with people we never would have met otherwise and made some of our dearest friends. Living in option b, we knew the value of a moment and how they could be limited. Life is short for everyone, but Claire made it clear and reminded us often just how fragile it was, so we wasted as little time as possible.
It has been 7 weeks since Claire took her last breathes. As much as it feels like forever ago, I also keep reliving that morning and it feels so fresh. But so do all the memories; surfing in Del Mar, walking on the beach in Hawaii, opening day at Fenway. Her life was one big adventure. Right now, it’s all I want to talk about, so I figured I’ll blog again. No idea if I will do this consistently or keep it to once a year. Over time I’ve connected with people online more than in person, which is weird, but so is life. So, if there’s anyone out there, wanting to read my stories of the adventures we’ve had and how I am dealing with all this, I’d love to continue to connect.
Thank you for sharing. We are new friends but I know our paths have crossed for a reason. We are definitely in a new season with my grandson Kyle’s health/challenges.
Keeping it real…
Terri
I’ve followed your family from afar. Thanks for sharing Claire’s beautiful life.
Option b…… kelvin tells me often that the gift of breathe is ALL we need to continue with this life. Sounds so simple and true, huh… This has become my option B ( priority… breath.) You KNOW this better than most.
I truly appreciate reading your words and thoughts… thank you for sharing with us.. I love you ❤️
I am so glad you are putting fingers to keyboard. I’ve always loved reading your words. Keep em coming. Thinking of you.
Oh, Colleen, I will always care. There you are being all honest and open and all I can do is cry at your words and every time I listen to her star song. But, you , Jared and Chloe are more than just Claire. Yes, she was a star and so are all of you. I think it must hurt to not be so busy all the time. To not be busy must be a constant ache. I love you all, keep writing.
I love you. So much. 💜
Please keep writing my friend. You have a gift. Thinking of you and your family often. love, brenda