We have been SOOOO busy just living life that we haven't really caught up with ourselves until today. The joy of a beautiful day at Tahoe today can not be surpassed by much. Caitlin and I both needed a get away and a bit of peace for the day. What could be better than the most beautiful place on earth!
It is difficult working full time and taking care of everything. Each time one fire is put out another one ignites. Maintaining therapies for Caitlin is just a never ending battle. The energy and the hours to understand and appeal this situation is more than anyone should ever have to deal with. My next career could be working in Washington, DC educating all the bureaucrats as to what it really is like. That or working as a patient advocate for someone who needs a persistent individual in their corner. Despite my efforts we really don't know from one day to the next which therapy Caitlin will have or which will be denied. We are in the process of a fair hearing with Medicaid to have our appeals heard and hopefully rectify the way the past month has been.
We have been to weddings, wedding showers, bachelorette parties, and baby showers. Our weekends have been spent celebrating our friends and the events in their lives. As fun as it is we want to include others in our celebrations no matter how small they are. We have lost that a bit in our lives because of time and everyone being so busy. But there are many celebrations to be had in Caitlin's life. Each day there is gained strength, ability, and forward movement no matter how slow it may seem to others. I think there is a difference always in thinking about what was, what could be, and what is happening today. I continue to celebrate today and maybe yesterday but I can't look much farther ahead. Being tired and angry are not a good combination, but I am feeling those two things more now than ever. I have been questioning myself a lot these days as I grasp at straws to hold onto a life that is not strictly guided by Caitlin being a victim of a stroke. To truly feel one emotion I know that you have to feel others as well but I just want that one emotion to be JOY... right now and maybe forever!
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2 comments:
Thank you for writing such an honest, meaningful entry. You and Caitlin are enduring so much, and yet continuing to be mindful of each day. I love you and think about you often. Jess
Congrats for your continuing efforts and your sense of duty for your daughter. It's an awesome and uplifting experience to see! Love ya both.
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