I have spent a great deal of time considering the new site and what I hope it will achieve. First and foremost is the sharing of information with families in a similar situation. To that end there is the main part of the site and the repository for all our documentation.

This portion of the site is to help organize information as well as add a personal bent to it. We are hoping that this added dimensionality will enhance the content and add a different perspective to it and, perhaps, make it more useful or meaningful.

On a more personal note, my hope is that the site can act as an electronic organizer for our thoughts and experiences and ensure that information is kept safe and not tainted by time, or my poor memory.

Beyond that I think the site can serve as a record for our son, an electronic diary of his early years that he can look back on. Perhaps for our daughter as well so that later in life it can help her understand her brother’s early struggles and, upon reflection, perhaps hers as well. For there can be little doubt that our son’s condition has had an impact on her, both directly and indirectly, of which she can, at times, be all too aware.

And finally, but no less importantly, it provides a means of expression for things that all too often go unspoken but are too important to go unsaid.

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