Lessons in vulnerability and giving thanks

In hind sight, moving right before the hardest holiday of the year, maybe not the best idea ever. The days leading up to Thanksgiving I was a mess. I cried a lot, I laughed a lot and thankfully I didn’t smash all of the things that I wanted to hit really hard. I really want Thanksgiving to be my favorite holiday as I like it’s premise more than all of the other holidays. Truly, when you focus on gratitude it changes the world and only for the better. I love telling the people on Claire’s team how we are grateful for them and giving them our thankfulness gifts of apple butter and salsa. I love cooking so the idea behind a big meal with people gathering together to give thanks, I am all about. However, I have come to hate Thanksgiving, most likely because I still have that fresh memory of the depressing feast in a restaurant, just the three of us, Jared and I fighting while Claire fed herself for the last time. I really wish I could file it away and forget but I haven’t found a way yet that doesn’t involve me completely numbing and unplugging from the rest of life. I just try to cover it up with new memories and that is going alright. This year we figured out a nice little cocktail for Claire and she didn’t have any seizures and was a joy to be with for the day. I enjoyed getting a few more boxes unpacked in my effort to find the cinnamon and cloves. Chloe twirled in circles and played with the many imaginary friends that were over for the day. It WAS really nice. I cooked a bit, we went down and took a walk by the ocean and came home for our feast. I served up hot food onto the plates as Jared started to feed Claire. I sat next to Chloe and tried not to stare too hard as she fed herself, but the sight was awe inspiring. It didn’t last long and she was off, I chased after her and Jared was left at the table, struggling to feed himself and Claire at the same time. I filled with rage. I hate that this is this hard. I want to be grateful for what we have but it was hard in that moment. I don’t know why, but for some reason, I was transfixed with just how vulnerable she has become. If we don’t cut the food up right she could choke, if we don’t make sure that she eats enough her weight could drop and we would need a feeding tube, if we don’t help her to sit correctly it could worsen her scoliosis and it goes on. Claire is very dependent. As time has gone on, she grows and gains new things but even with progress, she needs a lot of care. But if I step back from my pain and the emotion of it all and I look at her, she is amazing. Her circumstances have forced vulnerability on us but with that has come courage and connection like nothing I could have ever imagined. I recently watched this Ted talk on vulnerability again. The speaker discusses the history of courage and how it first meant telling who you are with your whole heart and having the courage to be imperfect. That is Claire, every day. I don’t want to go through the days looking at Claire and feeling badly that she is so vulnerable and helpless. I want to see her as the courageous little girl that she is. She lives her life honestly, she cries when things are sad, laughs when things are funny and loves beyond words or actions. She teaches me that perfection is not the goal, living a life where we treat each other like everyone is worthy of love and belonging is and that is indeed something to be thankful for. Here is the video again, I think it is worth every second of the 20 minutes, I honestly think it’s worth watching twice.

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