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.


Moving On

I knew that the day would come. Over the past few months it had become harder to get Claire into our home. I either had to carry her up a flight of stairs or transfer her to a wheelchair and up a curb that was high and uneven, neither a safe option. Honestly, we should have moved a while ago but I couldn't. I couldn't let go. There were so many memories. Memories of Claire feeding herself birthday cake, completely unassisted. Memories of Claire crawling at lightening speed naked after a bath. I remember our first day there. Jared was at work and I was waiting for the movers. Claire, 17 months old, played with her toys and drank juice from her sippy while I laid on the floor in exhaustion. We had been living in separate states for 4 months and I had been very ill on top of caring for Claire and my mom. I was so hopeful that this was a fresh start. We were back where we wanted to be, together, by the ocean and with a great job. My optimism lasted about 24 hours as the next day we went to see our old primary care. The rest is history, therapy started, testing began, a diagnosis came, our lives changed. Claire lost so much in that home. She stopped breathing for the first time there and had her first big seizure there. We brought Chloe home here. Everything that her sister lost, she did in this home. Chloe taught us to laugh and play in this home. Jared and I learned to grieve and to fight better in this home.

One day I was messing around online and saw that a condo around the corner had dropped in price. For whatever reason I called the realtor and he showed it to me that day. We made an offer and with little negotiation we were in contract. We planned to move mid Dec. I thought I would have time to let go. Three weeks ago I got a call from our land lord. They had good news.  They could let us out of our lease but we had to be out in two weeks. I don't know how it happened but somehow it did. The closing got moved up a month and we got the keys two days before we had to be out. Packing was hard. The memories overwhelmed me and I had to stop a lot to take deep breathes. I don't think we would have made it if it wasn't for all of the friends who helped us over the coarse of the weekend. It was surreal to be moving with friends instead of professionals and I have to say a lot better even though it caused us a lot more physical pain. After a few very long days, it was done.

I met with the manager to do the walk through. He took notes and I looked around one last time. That's when it hit me. I looked up at the stars on the ceiling. The memory of the first night I had to sleep in Claire's bed flooded all of my senses. The smell of her freshly washed hair, the feeling of her cold sheets and her little body, as she would stop breathing I would shake her and and sing to calm her down while looking at those stars. I remember laying there, thinking about how my world was changing in that moment. The world I knew was different. It was a world where children stop breathing for no good reason. A world where decisions aren't as easy, things weren't cut and dry.  I am certainly not the same as I was when we moved in a few years ago. If I am honest, I do like who I am more now. That was a long five and a half years, perhaps the longest of my life but I have grown into who I am now and I like me better now than I did then.

Funny how much of life depends on perception. The world is the same today as it was then but now I am more aware of it, much like myself. As we settle into our new home I wonder. Will this be the home that we loose Claire in? Will this be the room that I will be sitting in when I find out that there is a treatment that can help and Claire will be getting it soon? Will Chloe break her first bone jumping off these bunk beds? Will Jared and I learn to read each others minds and be more considerate here? Only time will tell. I do know that so far Claire has had great success in her kid walk, stepping with the right leg on her own 15 times, Chloe has enjoyed turning the top bunk into the boardwalk and launching her dolls of the roller coaster and that things wilder than my imagination will take place, both good and bad, and I am ready for that.



I am sad that I didn't end up posting each day like I had planned to. There are so many facets of rett syndrome that we are working through right now and I have so much that I want to share. Yet that is the problem, there is so much. I was at dinner a while ago talking with a friend who lives a life dramatically changed by rett syndrome as well. We were discussing life and she remarked that everything happens at elevated levels. The people that we meet in our circle aren't just new acquaintances, immediately they are dear to our hearts, people that we would go to great lengths for. It is surreal to live life this connected to people, it gives such pure joy. At the same time, our pain, so much greater. When I hear Claire in the morning before the alarm goes off she isn't just playing in her bed, she is gasping, struggling for air while the dystonia grips her body. Jared runs in I grab the oxygen and we wonder if this is going to be one of those days that her body gets no rest. When the sun comes out I don't just notice the weather I soak in its glory, the cool fog, the warm sun, whatever it is it reminds me of seasons and balance. Captain Awesome labeled our life "spirited". It seems to better describe our entire world. Sure I could describe my life as difficult or overwhelming but that doesn't do justice to the intense levels of good that we experience within the days. We got the term from a book that our pediatrician told us to read and reread over and over for Chloe;  Raising Your Spirited Child: A Guide for Parents Whose Child Is More Intense, Sensitive, Perceptive, Persistent, Energetic.  Without an option, we have embraced Chloe and the intense levels that she experiences things at. I know that we have an option for the rest of life. I could numb with any number of devices but I have grown so fond of this really full life for the most part. In the last week we have had a lot of plans changing and seeing our life as spirited has helped to roll with it. Friday we learned that we have to be out of where we currently live by Nov. 11. I was shocked at first but as time goes on I am less and less phased by it. Sure, move out before we close on the place that we are buying creates some complications but I am really good at working with complications. I booked the Uhual and a hotel. I also scheduled furniture delivery and carpet cleaning for the 9th, just in case we do close early. I know it would take a miracle but I see at least a hundred every day so I figure it could happen. Both of these pictures were taken on the same day, a small example of how varied and beautiful life is and how good I am at procrastinating, I probably should have been packing!