We decided to get dressed up and hit up a hot spot with my Sister and her family for New Years Eve. Claire loves to eat at restaurants, and we hoped being out people watching would boost her spirits. I don’t mind having a night off from cooking either.
We enjoyed a great meal at Sarpa in King City and then ended the night at my sisters drinking champagne and toasting in the new year.
It was a bittersweet night, looking back at how much we have been through, what we have accomplished and how much more we must do. Mark and I have to live with the fact that we have two children with diseases that aren’t easily cured, that even if we were to get gene therapy tomorrow it doesn’t bring back what they have lost. Our daughter will cognitively be below her age and will always rely on us for so much of her daily needs. We have to prepare for an upcoming gtube surgery, and we are finally testing her eyes to see if the disease is causing her to lose her focus.
Its not what we thought our life would be, but that’s life.
Right now, our children are happy, they surrounded by love, and that’s all we can ask.