Wednesday, July 24, 2013

and they came back

The gang is back from their trip.  Oh, the fun they had with their first time tubing, trip to the sites around the Twin Cities, a little gopher hunting, and lots of laughs with their cousin Lachlan!  (Thanks to Emily and Abby for the photos.)   My story of being without electricity over the weekend paled in comparison to their adventures.  I was well taken care of by neighbours and friends, but it was good to welcome both the power and the rest of the family back by Saturday night.


Yes, it was a different kind of week.  Another reminder of how sometimes we function as two families: one parent with the two older girls and one parent with the two younger girls.  Ralph took Emily and Sophia (with his brother Bernie and daughter Abby) out to see family in Minneapolis for the week.  I stayed home with Rachel and Janneke (and the nurses and respite staff).

We are thankful for the support in place, so one of us can take Em and Soph out.  As siblings of sisters with special needs, their day-to-day routine is affected - and somewhat limited.  Yet, when I think about other families with "normal" children whose ages range from 15 to 3 yrs., planning family outings can be complicated for them too.  A teen and toddler do not necessarily choose the same fun.

We are conscious of how our family circumstance plays a role in what Em and Soph perceive as normal or possible.  We don't want our girls to grow up with a bitterness about their sisters, nor do we want them to feel guilty for wanting some of the same plans as other families around them.  People often tell us that our older girls are going to grow up so compassionate because of their sisters.  I don't buy that theory as solid.  I hear all kinds of perspectives from adults who grew up in homes with special needs.  The disability may play a role, but there is so much more: anger, grief, denial, acceptance, divided loyalties, resiliency, perseverance, creativity.... all these factor into the big picture.

In the end, we know we are not perfect.  We've made mistakes, and we will make more.  We are thankful for the grace from God that enables all of us to keep moving forward, forgiving each other and reminding us that joy is a choice.  

This week?  Well, the trampoline is up again.  After a summer off (due to last year's renovations), we are back to bouncing.  Who says you can't bounce with a feed pump?

Rachel is dealing with an ear infection, but she is mending.  She visited the doctor earlier this week, and I was saddened/encouraged by her cognitive development as shown in our visit.  When we pulled into the parking lot of the clinic, she began to panic.  When we pulled into the clinic room, she stiffened up, made distressing sounds and kept turning her head to study the ear/nose/throat tools that were hanging on the wall.  She knew why we were there and what was going to happen.  The doc on call was super with Rachel.  She saw the distress in Rachel's face and spoke directly to her, in a soothing tone.  I am thankful when the disability plays a positive role in the girls' treatment, reminding people that the girls' cues may appear different, but they are still responding.

We welcome the cool weather of this week, and we continue to enjoy the opportunities this season gives of being outside.

Peace to your homes this week,

Thursday, July 18, 2013

hey, no title

Life with Rachel and Janneke includes a lot of waiting. 

Janneke spent 30 minutes staring at that dish of water with a plastic floating turtle... 

While she contemplated the potential wet experience, her sisters and dad were enjoying water elsewhere this week.

Can you guess where?

Ralph took Emily and Sophia to see his sister Grace and her husband Ed who live on the shores of Lake Minnetonka in Minnesota. Ralph and I loved our years in Minnesota, so it is great to see our kids want to visit there too.  (We had some fun with FaceTime this week; Soph gave me lots of close-ups on her eyeball.)

Back at the home front, I am here with Rachel and Janneke.  Bit quieter here this week.  Sometimes, it's as if I am having a conversation with myself  -with the occasional yell interjected by Janneke.  I am thankful for the nurses, respite help, and PSW.  Most days, someone comes in to help for part of the day with the girls.  And provide some two-way conversation!

Back to that dish of water: After 30 minutes of deep thoughts, I wondered if I should just put the water away.  Suddenly, she moved in closer and hammered her head on the side of the dish. Yikes! Turns out, she thought she could get her face wet.

But, she was all smiles and soon proceeded to be busy with splashing and moving the water all over the place.  Wet floor, wet wheelchair, soaked kid... but a happy kid!

I am thankful for the lessons of patience and waiting.  I know Rachel and Janneke need time to process what is put in front of them, and I can learn from them. Sometimes, I am anxious to quickly work, fix, or sort through what is in front of me.  Taking the cue from Janneke to wait for awhile (but not hammer your head) is wise.  Kind of like a small Sabbath rest in the midst of the busy routine.  

I look forward to welcoming home the rest of our family, and I am sure there will be many stories.  I have enjoyed some special time with Rachel and Janneke - and quiet moments for myself, but it will be great to have the house filled with laughter and conversation again.  Rachel and Janneke need some love and chaos that only their sisters and dad can provide.  Me too.

peace to your homes tonight.

Thursday, July 11, 2013

thursday thoughts


I couldn't help but have that song pop in my head when I saw the photos of Rachel's leg dance in the hammock.

She loves to lay with her legs straight up in the air... excellent core muscles, eh?

Neighbours Jacob and Louise have generously allowed us to use their pool for the summer again.  Water therapy is good for all of us.  Yes, it does appear that Janneke is trying to vault out of her floating fish.  Sigh.  That kid!  

Shortly after the first photo was taken, we realized that Rachel is too big for the floating fish this year.  Her legs were losing circulation - hence the grumpy face.  Poor kid.  I was glad we figured that out within a few minutes.  We need a new plan for Rachel to be independent in the water, but for now, she is content in our arms.

Every so often the reality of parenting these unique girls hits a bit harder, and we have to find ways to talk through the stress and feelings of being overwhelmed.  I know each child is unique, regardless of ability, but sometimes, I wish we had a bit more of a pattern to follow.

A couple of things brought encouragement this week - the first was the recent copy of BLOOM, a magazine tailored for families who have children with special needs - but it is worth the read even if you don't fit into that group. :)  Louise does an amazing job as editor with creating something that appeals to many parents around the globe.  Check out the online copy.

And....the backyard is almost done!  The stairs and railing were added this week, and we are now able to use the lift.  The railing is mostly glass, to allow the girls to see out over the deck.  

In these photos, you can (somewhat) see how we are now able to exit the girls' bedroom, go down the lift, into the garage and into the Sprinter.  We love that set up, and we also appreciate having two exits for the home now- front door and back door.

Enjoy these hot summer days.  It wasn't too long ago that the cold was nipping our noses.

I hope your days are filled with bits of joy... and speaking of joy, a Happy Anniversary from Em, Soph, Rachel and Janneke to Grandpa and Grandma.  May you be blessed with many more years!

peace to your homes,

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,