Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
For those who aren't on Facebook - we made it home! Thanks for all your love and support over the last few weeks. I'll update tomorrow - too tired tonight.
Outstanding. Few know how the smallest detail, a slight change in facial expression, can mean the difference between a day full of worry or a blessed moment of respite. I've always found it difficult to allow myself to soak in the good moments but am learning, also in part, by exploring others' relationship to their child. Thanks for sharing.
Eric, you are so right about how we can tell so much about our children based on the slightest changes in their eyes, expressions, etc. We are our children's voice and it's why dealing with the medical world is so exhausting because they often discount what we tell them because they can't see it themselves or, more often, because it doesn't fit in their neat, little box. You are an amazing father - and writer and I so much appreciate what you share of your journey on your own blog.
Our son, Jack was born with an unknown subtype of congenital muscular dystrophy. Jack's disease caused him to have severe muscle weakness and he was ventilator dependent from four months of age until his death at the age of 15. This blog started out as a way to keep family and friends updated on Jack's spinal fusion surgery in the summer of 2006. Thereafter, it has become a window into Jack's life and the lives of those who loved him.
Our beautiful son died peacefully in my arms on January 5, 2014. Jack's journey is over. As Jack's mom, I now have to figure out how to live "Ann's Journey". I'm not sure where I go from here, but I know that wherever I go, Jack will always be with me, in my heart and guiding me in all I do.
Thank you for riding along with us on our journey.
2 comments:
Outstanding. Few know how the smallest detail, a slight change in facial expression, can mean the difference between a day full of worry or a blessed moment of respite. I've always found it difficult to allow myself to soak in the good moments but am learning, also in part, by exploring others' relationship to their child. Thanks for sharing.
Eric, you are so right about how we can tell so much about our children based on the slightest changes in their eyes, expressions, etc. We are our children's voice and it's why dealing with the medical world is so exhausting because they often discount what we tell them because they can't see it themselves or, more often, because it doesn't fit in their neat, little box. You are an amazing father - and writer and I so much appreciate what you share of your journey on your own blog.
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