Monday, October 22, 2012

birthdays and more


Today, we celebrated Emily's birthday - and last week, we celebrated Sophia and Ralph's birthdays.  Sophia hosted a party on Saturday, complete with gummy worm ice cubes, Ralph ate cake with a school of kids, and Em's got some mysterious plans for later this week.  I'm about birthdayed-out, but we are so thankful to mark another year.  And here's to many more birthdays, D.V.

In some ways, it feels like the last few weeks have been a bit blurry.  I experienced more back trouble again -which leads to more reflection and more frustration.  Probably both are good for my character over time, but I am not a patient patient.  Thankfully, I am able again to lift and manage the girls without extra help.  Here's hoping the back doesn't bail again.

I was distracted from my back issues by helping coach Sophia in cross country running.  Although I was no longer able to run with the team, I loved the chance to forget about my pain and watch the kids improve at their ability to run.  We finished with a cross country meet this past Friday, and I was so proud of those kids for finishing!  It was an amazing feeling to watch Sophia cross that finish line, knowing she completed her first race.  Check out the story here.

Rachel and Janneke are doing well these past few days.  A few weeks ago, we met with a specialist that is known to be a "puzzle solver."  He was a great person to meet who knew we didn't want to waste time with unnecessary questions or tests.  We learned that he was unable to offer any new advice or tests; so far, our girls continue to be undiagnosed.  I was impressed by his follow-up through email, and he made himself accessible to questions we had after the appointment.  Specialists like him are great to work with - I can hope that we meet more doctors like him in the future.  

Admittedly, it is a bit discouraging when we hear that there are no tests known that could help us better understand our girls.  I know that any new label or diagnosis wouldn't necessarily change our daily care for the girls, but when there is a diagnosis, many of the concerns and worries are validated - or named. Some parents talk about feeling a sense of peace when they can name the syndrome, instead of constantly listing all the anomalies.  As my friend Fraser put it - you "regurgitate" the list at every appointment.  That is tiresome.

There are weeks when we feel extra sensitive to the looks, questions, or comments made about our girls.  Funny how some days you can just brush that off - and other days, you can't shake the look someone gave you or the strange thing someone said.  Such is life.



I haven't taken as many photos in the last few weeks, yet I can recall the determination on Rachel's face last week as Aunt Jean, Aunt Alida, cousin Marg, and I toured Rachel's school and watched Rachel figure out a cause-and-effect music program with her teacher.

I can recall the joy on Janneke's face as she experimented with putting her nose in the water during her water therapy class.

I can also recall the tenderness in soon-to-be-six-years-old Kalan's eyes as he walked alongside Rachel in her chair during a hike yesterday.  He gently put his hand on hers and talked about how he'd like to see Rachel visit Grade 1 at Beacon sometime soon.

I love the chirps Janneke makes as we get closer to the children's centre for her preschool program.  She is learning to anticipate the time she has with new friends.

I love the songs Rachel sings as she sits alongside Emily at the piano after supper.  Emily plays a great Canon in D, and Rachel makes up her own words.  It's pretty cool.

I know that all of us have stuff to deal with - whether it's physical pain, job loss, a sudden change in health, an unexpected diagnosis, people who can disappoint you.....  and yet, it's still a daily decision to choose to find the joy in the moment.

That's what I'm trying to do.  Choose joy.

Peace,
spot

And as an afterthought: an interesting video.  It's 14:07 minutes of time not wasted:  ESPN (yes, the sports network) - Down's Syndrome - a father's honesty - and the same running stroller I used for Rachel's five years of running....

3 comments:

Donna said...

Powerful video! Thanks for sharing and for continuing to share on your blog.

Anonymous said...

Very moving video clip. Watched it with Nisha and Derick. Good to hear for all of us!
Thanks!
Doreen

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