Saturday, July 6, 2013

thoughts from spot

A belated Happy Canada Day and 4th of July.  It's a fun week around the Niagara region with both national holidays so close together - particularly because we live by the international border. For Canada Day, we were in Niagara-on-the-Lake and spent time exploring Fort George.  We also watched what appeared to be the largest cake paraded down the main street of NOTL into Simcoe Park where the entire town was served a piece.  I was amazed at the international flavour of the crowd - but everyone had the same mission: free cake.

We learned about the War of 1812... or the-battle-that-everyone-thinks-they-won.  Fort George wasn't exactly wheelchair accessible, but the gravel paths were manageable.  Other than almost getting shot with a musket while changing the girls' diapers (in what we thought was a private space), we had a decent day.

Here's a photo of Janneke and Emily, checking out the state of NY.

I was intrigued by Sophia's concern for how the First Nations people were treated during those years surrounding 1812.  Much thanks to her teacher this past year who helped create an awareness and sensitivity in the class for a such an amazing people and culture.

Ralph and I were thankful for Emily and Sophia's patience on our Canada Day outing.  It is not easy to push Rachel and Janneke's chairs through crowds - and endure looks ranging from curiousity to pity.  It was a good day, and we came home thankful but tired.  We were even more thankful to see Christina (respite worker) waiting to help us unload and settle the girls. 

* * *

Last week, we welcomed the new-to-us back porch lift.  We are waiting for the railing, gate, and stairs to be completed, but it was great to have the guys with Rexall Lewis and Krall install the lift and make sure it would be ready for use.  We are blessed by this gift from a very kind family in our neighbourhood.

* * *

The past few days have gone by quickly.  We've had some playdates, a few swims in friendly pools, and cousin Abby was over.  And yes, after waiting over a year, Sophia was able to finally watch Despicable Me 2; she shared this experience with her parents, Emily and cousin Abby.  

These first weeks of summer holidays remind me of the challenge we face when we count on school to provide the therapy and stimulation Rachel and Janneke need.  Now the days seem quite long and open.  I am grateful we have a nurse or respite worker helping most days with the general care and feeding.  This allows me freedom to get house stuff done, do "summer things" with Em and Soph, and watch Despicable Me 2.  

When the older girls say they are bored, I congratulate them on realizing they now have the opportunity to be creative.

With Abby, the girls decided to find a funky fruit in the grocery store - and try it.  This time, it was dragon fruit.  Somewhat tasteless but memorable.  

But, what do I do when Rachel and Janneke are bored?

Do they get bored?

Do they like being in the swing or in the hammock every day?  

What do they want to do?

I have no idea.

And sometimes, not feeling confident in understanding Rachel and Janneke wears me out in my mind.

Today, we decided to let them experience the grass and water.  We filled the old sandbox with a bit of water and let them take in the stimulation.  Janneke thought it was the greatest idea.  She couldn't decide what was more exciting - the grass floating around or the beach ball.

Rachel?  Well, she wasn't impressed.

In fact, I am not certain what Rachel really enjoys.  She remains the biggest puzzle for us.  Because Janneke can move around in her walker, she can express some intent on where she wants to be.

Rachel relies on us to carry her from place to place, and I can't quite figure out where she wants to be.  She whimpers more these days - but maybe she misses school?  She is easily bothered by her hips, back, or bowels, so one position for an extended period of time isn't great.

So... we keep guessing.  Today, the hammock was a good place to be.  But even there, we wonder if we should read to her, talk to her, or let her be?  We try different things, and we try not to overwhelm her.

Oh, the guilt of wondering if we are not doing enough or doing too much.

At the end of the day, when the girls find sleep, we still give thanks for the joy they bring.  And we hope tomorrow brings new ideas for filling the days.

Peace to your homes,


Anonymous said...

Sara, it makes me sad that you feel guilt over not knowing what Janneke and Rachel want. I admire so much all that you do for all four of your girls, and know that you do your utmost to keep them all active and happy. I wish I could give you a huge hug and tell you personally that you are doing a wonderful job. What amazing neighbours you have to give you the lift! I'm sure it will be used often and with loving thoughts of them. Cyber hugs to you, and wishes that there is peace in your home too. The homily today was about peace! Wishing lots for you. samm in Welland

Kelli TenHaken said...

I always love your honesty. When we break from Ruby's routine, I too feel guilty if she is not being entertained. It is hard to know what is best since I believe they need plenty of down time as well.

Once again, I completely connect with your post. Thanks for sharing!

You are a fabulous Mom!


Anonymous said...

You and Ralph should never feel guilty, I believe you are doing everything for your family, you give to your 2 girls with the great challenges, you give to your 2 girls with lesser challenges, you give to each other, your give to yourselves, you give to your family as a whole, both to your immediate and your extended, and you never forget your community and church, what else can any humans alive do. I admire you and your family. You are an example to everyone. Think of you often.

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