A blog concerning the life of an extremely disabled child, his father and the poetry of that life
I didn't know any of this on the day of diagnosis. It has taken me many years to understand the complexities of what lay before me. Even though I knew that something was terribly wrong I was just so grateful that my gorgeous baby wasn't going to die. Apart from that I was totally naive. If only there had been someone to offer me those words of wisdom. In some ways though - I was better off not knowing. Too much information would have scared me. I needed to find out a day at a time.
An absolutely great presentation and Elizabeth deserves many kudos for making it happen. BTW who was the quite handsome and photogenic man from Israel?
MHK you were better off not knowing the details of the struggle that lay ahead but those fundamental phrases, faith through experience, might have helped you through some rough spots, but only if they were coming from other extreme-parents. Personally it wouldn't have made a difference for me because what I learned from these years with Segev is to be more open and accepting, something not as easy in the beginning.Phil, we need more showings like this. I've put in on my blog, on twitter, on my facebook page, on Segev's, on my page for Severely compromised children and the Ohtahara page. The message is universal for all parents in our position. Makes me think there should be a retreat just for parents of severely compromised kids because sharing this actually makes the load a little lighter.
You are so right, Eric...there is an annual retreat for parents of near drowns in Washington State...we were never able to make it; primarily because of the distance and secondary because as my daughter would say, Adam's shenanigan's (mostly excessive saliva/mucous production which induces hyperventilation). Could I offer my home as a retreat? Maybe the future will allow us all to get together?...at least once, before we all pass on! The ultimate in cool!
Phil, I would want it to be a retreat for you as well: having us in your home would also be stress because the routines we have as caregivers is so important to our sanity. Still, a lovely thought, one worth savoring.