The SHOW is coming up on Saturday and I am totally not
skeered. Although phrased like my usual brand of b.s., that’s true, this time. I’m
excited! I am absolutely getting my brave on, and I’m happy to get to hang out with this awesome and beautiful cast of fabulously righteous women. I am happy so
many of my friends, family, and framily are coming to see it. I'm even sober right now while I am saying this!
Since my Listen To Your Mother piece is about a day five years ago with Griffin
and Dylan, here’s a Where Are They Now (apparently my secret writer aspiration is to write for Parade magazine):
Dylan is 22. He aged out of high
school last year. He spends his days with his biological mom, and is with us every
other week, for the evenings and weekend. He has cerebral palsy, is nonverbal, and
does not have use of his right side. Prior to April of 2010, Dylan took
no medication, had very mild scoliosis, was alert, and had good trunk and left
hand control. He could feed himself and scooch around on the floor
independently. For unknown reasons he
suddenly started uncontrollable head movements, and lost control of his left
hand. His neuromuscular scoliosis advanced at rapid and alarming rates. He
could no longer get around independently or feed himself. He also went from a
sunny happy all the time personality to a more withdrawn and vacant one.
Seizures were ruled out. After a series of trials a medication was found to
control his head movements. He is mostly
bed ridden now, and has a G-tube for feeding. He had spinal fusion surgery last
October. He doesn’t really grab anymore. He is often unhappy now, but it’s
difficult to know why. My husband, Jeff, will try various positions and
entertainment options and that will often work for a while. Every now and then
the sun will peek through and he will laugh and smile as he used to, and it’s
amazing. He still loves movies, and especially scenes of chaos and destruction!
I took this photo of Dylan and his
dad at Christmas.
Griffin is 20. When he was 17 we
made the absolutely heartbreaking decision to move him to a group home. It felt
too soon, and yet we didn’t really have a choice, as he was extremely
aggressive and it wasn’t safe for Dylan, or really any of us. His group home is
only 3 miles away though, and I see him every weekend. He is still in high
school, still wears a diaper, is low verbal. His receptive language isn’t bad
at all though, and he’ll follow simple instructions. He loves googling videos
he watched when he was very young and watching them over and over on YouTube.
Sometimes it will be the previews on the VHS tape that he’ll want to see, but
you know what? They are very often on
YouTube! He’ll google something like “Walt Disney’s Masterpiece Gold Collection
Pocahontas VHS” and tada! There it will be and he will happily watch the
previews over and over. Or just the part with the logo where the announcer says
“The maaaaagic of Disney” only it will be like infinity times for those of us
in the audience and it will go like this: “The maaagic of Dis….the maaagic of
Dis….the maaagic of Dis….” Repeat. Forever. He still loves popcorn. He still
jumps up and down….even if he’s holding popcorn. (That will make more sense if
you come to the show. Come to the show!)
This blur is Griffin in his room at the group home, super happy because I got him a computer.
This is Griffin on his first
birthday on my dad’s shoulders and Dylan at three on Jeff’s.
Here is a family shot from 2011 where Dylan is managing to grab Cassidy and photobomb! A multi-tasker! Griffin is auditioning for the part of a secret service agent.
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