Christmas Again-Update

Ok-clearly I haven't updated the blog in a while. Over the holidays enough people have asked about the blog that I decided to pull myself out of hibernation. I kind of froze up on the blog because I didn't know what to write. I haven't really known what to say. I feel like I should be writing about defying the odds or huge amazing miracles or even news of something that turned things around for Seren. I think we all initially hoped that Seren would have some sort of mental development or some sort of awareness. That isn't going to happen. When I look back at my initial posts it is almost painful how much hope I carried. As time has passed, it has become clear that Seren is permanently and profoundly impaired. I think she most accurately could be described as in a permanent vegetative state. She doesn't respond to her environment. She does have periods of sleeping and waking, but she doesn't smile or respond to stimulation. She does not have the slightest bit of development, nor will she. It's difficult to explain to people. Its uncomfortable for people to hear and understand. It is incredibly sad for everyone. Its kind of hard to put that out there.

I do have one plug-something that almost made me blog again a while back-

If you wish to understand the perspective of a mother with a profoundly impaired child and the impact it has on a family-I highly recommend Before and After Zacharia by Fern Kupfer. Fern wrote this book in the 80's. In fact, Zacharia was a year younger than me. Fern gives a no holds barred account of her feelings and the impact of Zacharia on her family. The only real difference in our stories is that it took their family two years to determine what was discovered about Seren in two weeks. (Note: their conditions are not the same but their level of impairment is similar).

Most people can't begin to understand what its like to be me. Fern explains a mother's perspective bravely and perfectly. I warn you, its not a feel good story, but it is a good story, and one that isn't told very often. Parents in a difficult situation should have choices. Fern explains the choice that both she and I made. There is no judgment of any other choices. I contacted Fern via email and she has been a huge encouragement to me.

We are all doing well, and counting the blessings we have, as we find them. Sorry it has been so long- but Merry Christmas to all and sincerest wishes for an glorious holiday season.

J