Friday, September 19, 2014

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Such a cheeky little girl... resting her feet on the busdriver while he unhooks the tie downs.

We finished the week with all girls back in school.  Both Rachel and Janneke kick their feet and grin when that bus pulls up.  I can't say the same for Em and Soph when they pick up their backpacks and march out the door, but I do know their feet aren't dragging.


We are very thankful for classrooms and teachers and support staff that make the day a joy for our girls.  And we are very thankful for home care nurses who help me greet Rachel and Janneke at the end of the day, so I can spend time with the older two girls in the late afternoon/early evening hours.

Support comes in many forms - but it is all so necessary.  If you are from Ontario, I'd like you to check out the provincial advocate initiative which is a stage for stories and submissions related to youth and children with special needs.  Here's the facebook link.  The aim of the project is to put the voices of children and youth in the centre of the discussion on respecting and supporting children with special needs.  If it relates to you, submit your story.  Go for it.  We need your story.

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Here's a pic worth sharing: 

I took Janneke, Soph and Em to African Lion Safari not long ago.  Kudos to the park for improving their accessible spaces, including a large washroom with an adult-sized pull-down surface for diapering and personal care.  They added a playground that accommodated Janneke's wheelchair, and the staff was very helpful when I asked for assistance.  That's a big deal.

The most memorable part of that day? Sitting next to a young man who lives with short term memory loss due to brain cancer.  He was incredibly sweet, asking my name and story and Janneke's name and Janneke's name and my name and story...  It was one of those times when I didn't care if I had to repeat myself over and over. His character spoke of resiliency and determination.  I only wish I could remember the gentle giant's name now.  


Hope you have a good weekend.  I'm hoping for continued healing of Rachel's incision sites and for good health for all of us.  And hoping Ralph finds his way home from the administrator's conference by Sunday. It is good (and important) for both of us to take time to step away, but I am reminded once again that it is that much sweeter when we have the full team playing here at home. 

peace, 
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Friday, September 12, 2014

to sum up


The week has ended.  To sum up:

...one tired girl who grinned from ear to ear when she was placed in her own bed at home late last night.  She has been dealing with typical post-surgery pain, but she seems to be improving each day.



...one happy girl who was constantly making happy sounds all week, thrilled to be at school and thrilled to be dancing with Aunt Grace who came for a visit tonight.



...two happy big sisters who loved seeing Rachel in the hospital but are thankful that the whole family is now at home.

...and two tired but thankful parents who look forward to some ordinary days.

peace for your weekend,
spot

Thursday, September 11, 2014

Update

Just a short update: The surgery went well, and the sedation procedure went better than expected. There were a lot of people in the OR room, ready to assist and support. We give thanks for our community of support and for the many prayers. We were certainly resting on that support while we waited, knowing that God was and is faithful in His mercy and love- no matter the outcome. Now we wait some more as Rachel recovers and transitions from IV fluids to regular g-tube feeds. Hoping to sleep in our own beds soon...

As  I sit and wait with her, I catch glimpses of other families whose stories include long difficult chapters where they must call the hospital their second home as they deal with illness and disease. Those chapters are not familiar to me, but with our short hospital stays, I am reminded that each day presents different challenges for all of us- big and small. May we never take for granted the days of good health, conversations and emails and texts, good jokes, and shared smiles. We can't lose sight of what it means to search for joy, to show grace to prickly people or have patience in frustrating situations. And we can't forget to extend that offer to help, to listen, and to support those who find the search for daily joy to be near impossible. Living in community can be messy at times, but it is so necessary.

with a thankful heart here at Mac, I wish peace for your day,
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Tuesday, September 9, 2014

another surgery


Tomorrow, Rachel will have surgery to re-site her g-tube.  In 2006, her g-tube was originally sited higher than normal, and it is now sitting in and around the ribs. Though it is a minor surgery on the spectrum of surgeries, it is still intimidating to consider.  We know the surgeon, and we know there will be familiar faces greeting us and taking care of Rachel tomorrow.

Still, there is anxiety.

Having Rachel and Janneke has forever changed my parenting from what I thought was normal with Em and Soph.  Most days, I don't give any thought to Em and Soph getting sick or breaking limbs, yet, often, I have to fight that feeling of wondering how long Rachel and Janneke will be with us. This is not to say that Rachel and Janneke are so sick -though they are documented as medically fragile, nor am I wasting away in my worry.  To see them with all their cheery chubbiness, the word "fragile" isn't quick to come to mind.

Still, it's a feeling of uncertainty with regards to our girls' life.  When no one can tell you what or why or how about your kid, you wonder the tough questions.  When the girls get a cold, I wonder if they can fight it.  And they have, so far.

Four years ago, Rachel was to have an MRI.  She was to be sedated for the test - typical procedure.  I was very clear with the staff that Rachel's throat structure was unique, and they ought to be prepared for an atypical experience.

Four hours later, Rachel was fighting to live, fighting the bronchial spasms that came from multiple (unsuccessful) attempts to intubate her for sedation.  I wondered if the staff didn't take me seriously when I told them about Rachel. The mother bear in me wanted to ROAR... but I cried.

Needless to say, it's been four years of growth and development for both Rachel and for the field of paediatric intubation.  At last week's pre-op, I was pretty clear on my sentiments regarding the previous experience.  Tomorrow morning, I will be just as clear.

Am I anxious? Yes.  I feel as if the anticipation of tomorrow's experience is like the teacher's red pen, circling the anxiety that I try to tuck away and hide.

Still... Yes, I need to still this anxious heart and trust that Rachel's story and our family's story is not in my hands.  This particular part of our story, like all the other parts, are in the hands of the Great Author, God, who is faithful.  And tomorrow is not the end of the story.

peace,
spot

Thursday, September 4, 2014

schoolin'


In the sweltering heat of this week in September, Rachel and Janneke tried school today.  They will officially start on Monday, September 8, but today was a trial run.


We were thrilled to see our busdriver and rider from last year.  They take such good care of our girls, even thinking to find soft padded seatbelt covers to prevent rub marks under the girls' chins. It's the little things that show big hearts.


Earlier this week, I had a chance to sit down and meet with the teams that will be working with Rachel and Janneke at the Niagara Children's Centre School.  We discussed the girls' care plans and issues with their feed pumps, health and abilities.  I was asked to write down one goal for each girl on a cut-out yellow star; these stars will decorate the school hall.  

Here are the goals:

Rachel - "I want to learn how to better communicate my choices and preference to others."

Janneke - "I want to learn how to walk with my head up."

I've decided these are good goals for me too - learn to be a better communicator and to quit staring at the ground when I walk.

As for the older two.... well, they are past that stage of "I'm-so-excited-for-school-please-take-my-picture," so I caught them on their way out the door.  


enjoy the week's end.
peace,
spot

Monday, September 1, 2014

ten for summer's end

Janneke's preferred posture at the beach.

Rachel's preferred posture at the beach.

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We've been campin'...


when a leisure game of Kubb turns into a full-scale tournament...


 when it's lovely to be sitting and talking and not doing too much more....


when feet become black from the sooty sand but they still get tucked into a sleeping bag...


when you are chased down and dunked for not jumping in...


when sharing the hammock is better than swinging alone...


we call it camping and this summer, we can finally call it fun, after many try-and-try-agains with wheelchairs and feed pumps and sand.


It was a treat to share these recent camping experiences with family made up of cousins and cousins-in-law and friends who loved to visit the campsite for coffee, play tug-of-war, take bike rides and hikes.  We can't say enough how grateful we are for the respite help provided by Christina Teeuwsen and Katelyn Pot.

And it was a treat to see Rachel finally relax on our last day at the beach.  She was comfortable enough to sit at the sandy edge with her dad and go into the water with her mom.  This was a huge step for her since she prefers her bed and home to anything else.  


Have a super week - especially to all beginning a new chapter with schooling, teaching or life.

peace,
spot