And here is a video too
We spent just about 4 1/2 years undiagnosed with Dan. There were times we wanted to give up and times we did. When we started our journey in 2006/2007 genetic mutation testing was not often performed and required lots and lots of paperwork. The tests have gotten better over the years, and more conditions are being "discovered". But we still do not know much about these "new" conditions - causes, treatments, cures. There is still alot of work to be done.
Although it is a few days late, please take a moment to think about those with kids who are struggling to find answers. Before you judge their actions or question their motives or intentions, take a minute and truly think about what you would do if you were in that situation.
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Thank you - just because the doctor doesn't know what it is doesn't mean it's not happening and real.
ReplyDeleteThank you for the reminder to take a moment and think, Jill. I must admit, as I began to follow the NPD blogs, at first I DID sometimes wonder about the paths some of the parents had chosen. Then I came to know these families as real people, not just names on a page. I began to share your journeys, not just read about them. And I came to realize that ONLY the families know what is best for their child. And I DID think about what I would do if it were me. And the answer that came unquestionably to me was, "I would do exactly what they are doing - everything I possibly could to help my child." And I would wonder and question, just as they do, whether I was doing the right thing. Did I miss something? Did I make the wrong decision? Does he/she know that I am doing the best I can? The long and short of it is, these precious children and their families have, in the short time I have "known" them, taught me more about love, compassion and hope than I had learned on my own in 60 years. It is a high priority in my life now to do what I can to help find treatments, cures and just as importantly, resources and support. xoxoxo
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