Hello everyone.
At our second day of conference we was able to meet the rest of the Doctors one by one . We had 3 top accepts in this disorder reviewing Sammy's MRI results.
After initial picture of all 3 MRI we was told same thing over and over again. Even know that Sammy's last Brain MRI shown more damage than the first ones,he is assessed mostly by how he feels and doing physically. We learned that Sammy has not only rare disorder-he also has rarest form of rare disorder which appears and starts in 2 places instead of one.
We understand that there is very little we can do medically to get Sammy better,but make every day matter and enjoy every minute Sammy is with us.
We realize that even know Sammy cant speak -he understands everything and gets sad if we are sad. We have to learn how live today making sure that we have fun as a family and treat Sammy like any other kid.In the near future our goal will be to move on with our lives and dealing with changes as they come, enjoying little moments,making Sammy part of everything we do.
As I was thinking about today I try to make sense of Sammy's mission in this world. Does he have an old sole? Is he the chosen one ,as we come closer to redemption?
Sincerely Mom
Friday, July 18, 2008
2 nd day of conference
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3 comments:
may your lives be filled with joy and happiness and may it all be behind you! its good that you can judge Sammy's condition by his behavior and not by his test results. may hashem let chaim shmuel go from strength to stregth and do many mitzvos! have a great shabbos!
Shabbat Shalom, Comrades! May redemption for Sammy and for all of us come very soon!
shabbos with the community was one of prayers and good wishes for chaim shmuel ben chana's continued improvement and recovery. his mom and dad's invincible spirit is an unusual source of inspiration and guidance. your odyssey with chaim shmuel ben chana is an incredible journey of the soul and spirit. may g-d the eternal captain help navigate your ship through the turbulent waters, quiet the storm and help us all as family and community reach and enjoy beautiful shores,speedily, now!!!
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