My son passed away last week--special needs update in op
Mar 7, 2017 17:03:02 GMT
agengr2004, SockMonkey, and 64 more like this
Post by rst on Mar 7, 2017 17:03:02 GMT
My dearly loved youngest son, Daniel, passed away at home, with hospice supports after a lengthy decline related to his cerebral palsy. He was just weeks short of his 17th birthday.
He and his identical twin suffered a severe case of Twin to Twin transfusion syndrome, had surgery in-utero, and were among the very first cases in which both twins survived and the pregnancy went full term. He continued to defy the odds all his life -- was fully included in his neighborhood school, navigated a power wheelchair, communicated using a voice output computer, and truly loved his life and all the people in it.
Over the years I've shared some about him here, in topics related to IEPs and special education, children with DNRs allowed to attend school, special needs parenting issues, and the like.
His favorite color was super-saturated yellow-orange (one of the few colors he could see) and he was a huge fan of all things squirrel related. His signature qualities, the things that everyone who knew him always recognized -- he was kind. And he was tenacious.
In honor of my Daniel, take a moment to appreciate the color yellow. Admire squirrels. And be very kind and tenacious where it matters most in your life today.
-----------------
UPDATE: Thank you so much for all your very kind words. There's going to be a veritable population boom in squirrel circles, looks like ; ). I know so many fun facts about squirrels now, thanks to my boy. For example, they are rampant on every continent and landmass except Iceland (too cold) and Australia (too many natural predators and competitive species). However, those in Australia who were purposely brought there are called "Chitterboxes" which is just an awesome name.
A very worthy organization for donation is Provail of Seattle -- the therapists there worked with Daniel for over 12 years, fabricating and customizing equipment to give him mobility and communication. I always loved their attitude -- "of course he can do this, now let's just figure out how". It was such a refreshing change from other parts of our world where he was required to prove competence in a new skill before he qualified to get the equipment to develop the skill. Provail uses every dime to the utmost for their clients, and I've never seen greater creative thinking and respect for people of all abilities.
Again, thank you for all your very kind words and prayers for our family. Andrew, Daniel's identical twin, is struggling particularly right now.
019_DanielColor by RST, on Flickr
He and his identical twin suffered a severe case of Twin to Twin transfusion syndrome, had surgery in-utero, and were among the very first cases in which both twins survived and the pregnancy went full term. He continued to defy the odds all his life -- was fully included in his neighborhood school, navigated a power wheelchair, communicated using a voice output computer, and truly loved his life and all the people in it.
Over the years I've shared some about him here, in topics related to IEPs and special education, children with DNRs allowed to attend school, special needs parenting issues, and the like.
His favorite color was super-saturated yellow-orange (one of the few colors he could see) and he was a huge fan of all things squirrel related. His signature qualities, the things that everyone who knew him always recognized -- he was kind. And he was tenacious.
In honor of my Daniel, take a moment to appreciate the color yellow. Admire squirrels. And be very kind and tenacious where it matters most in your life today.
-----------------
UPDATE: Thank you so much for all your very kind words. There's going to be a veritable population boom in squirrel circles, looks like ; ). I know so many fun facts about squirrels now, thanks to my boy. For example, they are rampant on every continent and landmass except Iceland (too cold) and Australia (too many natural predators and competitive species). However, those in Australia who were purposely brought there are called "Chitterboxes" which is just an awesome name.
A very worthy organization for donation is Provail of Seattle -- the therapists there worked with Daniel for over 12 years, fabricating and customizing equipment to give him mobility and communication. I always loved their attitude -- "of course he can do this, now let's just figure out how". It was such a refreshing change from other parts of our world where he was required to prove competence in a new skill before he qualified to get the equipment to develop the skill. Provail uses every dime to the utmost for their clients, and I've never seen greater creative thinking and respect for people of all abilities.
Again, thank you for all your very kind words and prayers for our family. Andrew, Daniel's identical twin, is struggling particularly right now.
019_DanielColor by RST, on Flickr
