Wednesday, October 8, 2014

Guys and Dolls - Fall Production at HVHS

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.

Saturday, August 23, 2014

Pies & Ice - the IceBucket Challenge with a CHARGE Twist

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 to learn more and/or donate to support the CHARGE Syndrome Foundation!

Monday, August 18, 2014

CHARGE Through The Year 2015 Calendar

One of the phenomenal moms I have met through the online CHARGE syndrome world, Anna Miller, has put together the 2nd CHARGE Through The Year calendar for 2015.  This was a sell-out fundraiser and awareness raiser for CHARGE syndrome and the CHARGE Syndrome Foundation last year and promises to be another huge success this year.

I sent in Kennedy's photo for consideration and was pleased to see she made the cut - woohoo!  So many cute kiddos, it must've been hard choosing! For only twenty bucks, you can get your very own copy of the calendar to support the CHARGE Syndrome Foundation and promote awareness of CHARGE. 

Sneak peek of the video featuring the supermodels of the 2015 calendar is available on the website or on the video below - enjoy & share with your friends and family!

Friday, July 18, 2014

Girls Trip 2014

Over the years, we've forged many friendships through the world of CHARGE syndrome.  It's definitely been a highlight to have others who get it with whom we can talk, share feelings and spend time.  Kennedy and MacKenzie have been close pretty much since birth, as have Jeanie & I, after nurses connected us in 1998 when the girls were both in hospital together.  Over the years, we've met many other moms, including Colleen and her daughter Clare, who we've connected with at the CHARGE conferences over the years.  The three gals have had a great time together at recent conferences but we always lamented the fact it was 2 years between the times when the girls would see each other again. Clare and her family lived in Ohio and Jeanie, MacKenzie, Kennedy and I in Atlantic Canada.

 We sought to rectify that this year and we did a short trip to Old Orchard Beach, ME.  Because of scheduling conflicts, we would only have 3 days together but it was just magical to see the girls connecting, chatting away, laughing and having fun.  As I mentioned in a Facebook post I did with one of the pictures of them chatting away at breakfast,
Some of my favourite times during this trip involved just seeing the girls communicating. They always sat at a separate table for meals and just chatted away. Three friends, all with various levels of hearing loss, each with different technology (BAHA, CI, BTEs) and different communication styles yet they all signed, spoke, gestured and made it work. Made my summer.

377 days until conference...can't wait for Chicago!

Jeanie, MacKenzie, Kennedy & Lisa ready to head to the USA!

The 3 gals ate at a separate table at all meals so they could yak...

Old Orchard Beach, ME - lots of fun on rides...

Saying their I Love Yous at Old Orchard

Visiting a beautiful lighthouse at Cape Elizabeth - the Portland Head Light

Swim time!

Always tough to say good bye...until next summer!

Monday, June 16, 2014

Cineplex, You Can Do Better

I've written many good reviews lately on Urbanspoon, etc.  Lengthy, detailed reviews, outlining the really awesome things about places I love. I really don't just complain without sharing the love as well when it's deserved.  Tonight's experience with our local movie theater, however, calls for a "You Can Do Better" post.  I've shared this with Cineplex, hopefully they'll respond and even more hopefully, they'll fix the CaptiView machines.

Dear Cineplex,                                                                                                                                   
Tonight my daughter wanted to go and see “The Fault in our Stars”.  Being proactive, we called ahead to make sure CaptiView was available for the movie (she has a severe-profound hearing loss) and purchased our tickets ahead of time in the optimal spot for the CaptiView to work, according to the manager with whom I spoke.  We arrived, made our way to the “Yay-for-not-waiting-in-line-handy-dandy-Mobile Pick-Up machine” and...this was our first oops of the evening:
In case you can't read it, that's an Out of Order sign. 

No sweat.  It’s Monday night, not too busy, so we made our way over to the box office, picked up the tickets and a CaptiView machine.  We rely on the machines so I’m not signing all night and can enjoy the movie as well.  
Want some butter on your popcorn?  Well get in line because the second broken machine of the night had the dreaded “out of order” sign on it:

Again, not a huge deal but it was just starting to look odd, seeing all these out of order signs on machines – really hoping the movie would actually play when we got in there. 

Well we finally settled in for the movie (yes, it did play) and guess what?  I ended up signing over three-quarters of the movie because the CaptiView bombed.  It would work great for a couple of lines then skip to about every fifth line of dialogue.  It was certainly not conducive to following the story line.  “Why didn’t you leave and ask for a new one?” you might ask.  Well then she misses the words and my signing.  They also had to turn about five on at the box office to find one charged and working when we picked ours up, so my hope that another one would be available, charged and actually working was less than optimal as well.  

At the end of the movie, I went out to talk to a manager (we went to the 6:45 show – surely someone would still be around afterward, right?) about the CaptiView, how neither of us really got to see the full movie because I was acting as her interpreter, etc. 
Yep…you guessed it:

It’s awesome that I can go over and let the 16-year-olds who are slinging the popcorn and sodas know of my concerns.  

Needless to say, Cineplex, it looks pretty unprofessional with all these out of order signs, machines not working, no manager on duty, etc.  These are minor inconveniences though, and all pale in comparison to the poor quality CaptiView machines (this is not our first CaptiView dilemma, unfortunately). If you’re going to have accommodations there for folks with disabilities, they need to work.  We pay equal pricing for her to go to that movie and she deserves the same access as other people in attendance. We paid for two admissions and between us, took in about 60-70% of the movie.   

Not cool, Cineplex. I honestly think you can do better.

Lisa & Kennedy Weir

Sunday, June 1, 2014

Teach a Girl to Fish...

Kennedy caught her first trout today.  Prior to this, she'd only caught smelt during ice-fishing.  I think the look on her face as she snagged that first one says it all.  She caught two of the three in the other picture.  I'd say that's a great haul!

Thursday, May 29, 2014

HVHS Chorale Ensemble Spring Concert

Tonight was the spring concert - Kennedy is on the far right of the front row in each of the three videos.

Changamano (Join Together) by Sally K. Albrecht
Dona Nobis Pacem (Traditional)
Some Nights by Fun

Wednesday, May 28, 2014

Kennedy's 2013-2014

This has become pretty drastic - over a year since I've last posted.  I know with the ease of posting to Facebook that many blogs have gone by the wayside. It's also indicative of our busy lives and not making the time to write as much or as often as I'd once had.  I still feel it's important to update though because so many folks are not on Facebook and there might be someone out there who follows us via the blog only so I just wanted to share a few photos of Kennedy and a little about how she's been doing.  

Last summer we had an amazing trip to Arizona for the CHARGE Syndrome Conference.  Last year, K decided not to attend the camp but to come to the information sessions.  She sat with a big group of teens who were interested in learning more.  She also did some volunteer work at the conference sales table. Along with a blast at conference meeting old friends and new, we had an unforgettable trip to Sedona and the Grand Canyon.
My beauty surrounded by the Grand Canyon
Volunteering at the CHARGE Conference
With her buddy Clare at the conference
Taking pics at the Grand Canyon
Poolside in Arizona

In the fall, it was back to school - she's now in grade 10 at HVHS and loves her school to pieces - a very proud Viking!  This year she also has no educational assistant for the first time.  She was ready.  We were brave.  She has done amazing in terms of making sure she is where she needs to be, has what she needs, and advocating for herself by asking the teachers or talking things out with us here at home.  We are so incredibly proud of her giant leaps in independence.

She also received an academic achievement medal in the fall at an awards ceremony for attaining honors for the 2012-2013 school year.

Kennedy in Oliver!  (front row, pink sweater on the right side)
This year saw her perform once again in the school's annual musical, which was Oliver!  She once again worked extremely hard to manage all of her school work along with the intense rehearsal schedule.  I feel she learns so much independence from going to practices, managing time, making sure everything is done, etc.  It's such an important part of her schooling experience for so many reasons beyond the artistic outlet.
Kennedy with her castmate, "Mr. Bumble"

Kennedy as a poor workhouse girl in Oliver!  (center group, first row, far right)

In October '13, we had a trip to Boston with her pal MacKenzie to see Selena Gomez - lots of fun and an amazing show!   

Winter - fireside + homework = a typical night...

She continues to enjoy her role as Auntie, playing, reading and basically doing whatever the kids want, including being their personal jungle gym!

One other thing new this year has been that she joined the HVHS Chorale.  She's been very faithful to practices and has enjoyed performing with the Chorale in public.  Her next show is tomorrow night!

Kennedy, front row center
Kennedy, front row center just to the director's left

In March of 2014 we took a short trip to Halifax, NS for some girl time with Kennedy's BFF MacKenzie & her mom, Jeanie.  It was a belated celebration for Kennedy's 16th birthday in January!

 In April, Kennedy raised over $100 and participated in the Relay for Life at her school, an all-night event where they put the "fun" in fundraising for a great cause.  Here she is in the photo booth with a couple of pals.

She also took music/band class this year and was thrilled to be a part of the percussion section.  She performed just last night and, for a group of students who just began in January, they were amazing!
Band Blitz - May 2014!  Kennedy, in back center on drums

We are closing in on summer now so lots of time for joyful jumping on the trampoline, lazy days at the trailer and lots of fun.  Hopefully our next update will be much earlier than a year from now!