Well it's hard to believe it - she isgraduating in June of this year. Now that 2016 has rolled around, it's even more real than it was in the fall when we had her graduation pictures taken. It's just surreal!
So it's been a year of "lasts" - the last first day of school, last Remembrance Day concert, last holiday show, last high school musical, etc. We are enjoying every minute of it as we know things will be different after this year although she is determined to stay involved with music and the arts through community choirs & theater groups.
This year's musical was "Anything Goes" - I wasn't too excited when they announced what it was going to be but the show literally was mind-blowing. What the director was able to elicit from these high school students in an intense, six-week rehearsal time-frame was astonishing—truly a great way to end her high school musical career. More updates as the year progresses but for now, I'll leave this link for the album for the musical photos for all the non-facebookers who might be checking in (you don't need a fb account to view these):
I so wanted this to be wrong when I saw the headline for this video a friend of mine (well, several actually) shared today on Facebook. I felt like I was in the middle of that video with the boy who'd been to the dentist and while still coming out of anesthetic, kept asking, "Is this real life?"
Action News reached out to the CEO of the Girl Scouts troop in
Jacksonville, and she said she wasn't aware of the situation, but said
they now have a troop for deaf students. They released this statement:
As
inclusion is a core value in Girl Scouts, Girl Scouts of Gateway
Council is thrilled to be working with the Florida School for the Deaf
and Blind to establish a second Girl Scout troop at the school for day
students. We partner with the Florida School for the Deaf and Blind to
deliver the Girl Scout program to resident students. Anyone interested
in volunteering as an interpreter for the second troop should contact
the Girl Scouts of Gateway Council office.
Um... er... newsflash: that's not inclusion. Merriam Webster defines inclusion as: the act of including: the state of being included. Rounding up all the girls who are deaf and grouping them together is the opposite of inclusion. Yeah. Our inclusion means those girls who are deaf don't need to interact with anyone else except other kids who are deaf.
This makes me LIVID! (in case you hadn't already picked up on that)
What's next? Maybe there should be a "caucasian troop" or an "african american troop" or a "blue-eyed troop"... maybe an "asian group"...you get my drift. This is absolutely abhorrent in 2015. Girl Scouts USA you ought to be ASHAMED if this discriminatory policy is how you operate!
I am ever so thankful that Girl Guides Canada was nothing like this and were absolutely incredible about ensuring that our daughter Kennedy was part of her neighbourhood Girl Guide Troop, from Sparks to Brownies, to Guides. There was never a question as to whether Kennedy "could" be a part of it, she just was, from the moment she walked in the door. What are you teaching these girls, Girl Scouts of Gateway Council? That if you're different, you don't belong? Or you only belong to your group. With your kind. This makes me sick. You need to do better. You need to apologize to this mother and to this child and to all of the other children who have been discriminated against. I can't believe you need to be told this but holy smokes, do you ever need to be told.
Kennedy, a proud and welcomed member of her local Brownie troop (above) and Girl Guide Troop (below), who also happens to have a severe-profound hearing loss amongst other medical and sensory conditions as part of CHARGE syndrome.
Well theatre production week is upon us and both we and Kennedy are running ragged between early morning calls for school shows then evening tech/dress rehearsals and then three night shows. And we are loving every minute of it. The last two weeks parents volunteer to cook and feed the cast and crew each night - musical suppers are a beloved tradition at Kennedy's high school. Either Graeme and/or I were there every single night. We love seeing and being around all the energetic teens who are working their tails off to put this show together.
Most nights she (and we) will be at school until about 11pm. It's so wonderful seeing her participate and enjoy this experience though! Her director & music director are so dedicated to making them so professional, it's a phenomenal show (I may be a little biased...) If you're anywhere near us, come for a visit and see the show this Thursday, Friday or Saturday night!
Here are some shots of the scenes my New York "doll"is in from the tech dress rehearsal (she's in a grey dress with black hat). You can click on the picture to enlarge it.
Check out this video where I take a pie in the face for every surgery Kennedy has ever had for CHARGE awareness and then an ice bucket for ALS! Click on this Post to view.
Visit chargesyndrome.org to learn more and/or donate to support the CHARGE Syndrome Foundation!
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
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