Friday, April 23, 2010

Life is good...except when it's not

Very emotional tonight thinking of a little girl I've never met.  Carly, age 8 passed away unexpectedly today.  Many of us in the Down syndrome community are heavy hearted tonight as we think about Carly's family.

Marguerite, oxeye daisy, Leucanthemum vulgare, Chrysanthemum leucanthemum

It doesn't seem right,
it doesn't seem fair,
and it doesn't make sense.

This heaviness of grief,
should make time stop.
Should make the world hush...

but it never does,
and it never will,
life keeps moving all around us.


Saturday, April 17, 2010 part of our week

Good fortune to have a playdate yesterday at an acreage near the school.  It was a beautiful day, the kids all got along, we held three-day-old chicks, fed an old miniature horse, caught frogs by the pond, jumped on the trampoline, hit homeruns, and spun around in the fresh air. Truly blessed to have met such nice families here.... and for Aidan, even the lane was exciting!

Happy in the laneway...just wait until you see what's at the end of the lane!



first frog

hanging around

Tuesday, April 13, 2010

Little Celebrity

So, Aidan was on the TV not once, but twice this week.  Both times for the Music Therapy program.  The Ronald McDonald House Charity just donated $30000 to build a multi-sensory room for children with critical illnesses to have a studio to relax in. 

While Aidan and his friend Sarah are not critically ill (thank goodness, touch wood...), Johanne asked that they be at the media event to help accept the cheque.  Aidan and Sarah will be able to use the room if they are having a bad day or simply needing a calming space (the therapy room is quite stimulating with all of the instruments).  I think she chose our kids as opposed to someone who is terminally ill to go on camera as it would be less stressful for them.  Everybody is different, but I know that when we were in that horrible time of waiting for heart surgery, I would have found the act of speaking to the media too emotionally charged to handle.  My nerves were raw...

Thankfully, thankfully, we've come through the other side of that stress and now can experience the joy of putting it all behind us.

Thursday, April 8, 2010

Aidan is a Star! Indeed it's true - I just watched him on TV!

Last week Johanne (Aidan's music therapist) phoned to ask if he could be filmed for a news report the next day.  Short notice because it was being done in response to proposed funding cutbacks of the Success by 6 program in our province.  Of course, I said yes - with one regret that I didn't have time to get my hair cut (vanity, thy name is Carol) .

Anyhow, just before filming, the station discovered that the funding would not be cut after all.  Great news, but now they needed to change "the story."  It became a general piece about the benefits of music therapy.

Aidan was a star, indeed he was. He was not shy in front of the camera, he played the instruments with gusto, he cheered, giggled, clapped, and had fun.  I was so proud of him.

Johanne said something beautiful in the interview (I'll try to paraphrase):  "we are trying to get the gap between the typical child and the child with challenges as small as possible to make it easier when they start kindergarten."  I love Johanne - I have never met such a genuinely positive person in my life.  Is it selfish of me to think of Aidan's music therapy as "OUR" music therapy?  I hope not because I think I get as much out of it as he does. 

Saturday, April 3, 2010

Another Obsession, Another Blog

Something in me doesn't like to mix my eclectic interests in this blog; 3 Little Billy Goats is my blog about life with my three boys, with a great sprinkling about my youngest billy goat and Down syndrome. 

I like my boys, so I like to write about them.  I was inspired to start a family blog after reading Becca`s about her life with Sammi, and Michelle`s about her life with Kayla.  Then my blog reading snowballed and I started to follow Amber`s, Bethany`s, and Sarah`s.  My blog list grew from there.  Anyway, what was I starting to talk about....oh yes, my tendency to NOT want to write about myself in their space as much.  Hence, the numerous blogs I've started. 

My latest interest has been in I started Another Kick at the [Paint] Can.  While my lads definitely come into the painting picture:

 I still feel a need to have a dedicated blog to record my journey with paint brush.  Sort of like Virginia Woolf`s A Room of One`s Own, except that my room is a virtual one.    I'm not sure what that says about me, but there it is.  The truth about my blogging compulsion.

And yes, I understand that this post has not been ``all about the lads.``  I embrace irony.