Friday, July 25, 2014

spot thoughts

How do you like to go up in a swing,
Up in the air so blue?
Oh, I do think it the pleasantest thing
Ever a child can do!


Thank you, R. L. Stevenson, for those swinging words, and thank you, Mekai, for pushing Janneke when you really wanted to be in the swing instead. 

* * *

It's been another week. We are ending this week with a summer cold for Rachel and Sophia.  Add some teething pain to that for Rachel, and you have a somber little lady who would rather lounge in bed and listen to stories.

Though the summer cold surfaced early this morning, we made good memories this week. Em and Soph were able to catch a great bike ride with their cousin Willa while Ralph and I took Rachel and Janneke to an appointment at Mac. We were also able to take the whole family to visit friends in Burlington; we did not take for granted the weather that allowed us to lounge outside in their accessible backyard and the good health that allowed us to stay for the whole afternoon.

It means so much to introduce our girls to our circles of friends. In the above photo, Rachel is literally feeling if Doreen is going to be her friend or a stranger.  She has this way of starting with her eyes and then using her hands or feet to rub the skin.  She more often than not breaks into a smile of acceptance... but I can't capture that easily with the camera because she isn't crazy about photographs. 

As challenging as it can be to take the family places, there are the times when it - the weather, the space, the conversation, the 47 patio stones, the naps, and the care routine- comes together.  There are times when we can feel normal.

The daily routine of our family's life can overwhelm me at times.  I worry about much - a common cold heightens the fear sensors, and I wonder if my kid can keep fighting each virus that comes our way. I know that our story is part of God's Story, but sometimes the chapters get a little intense.  I am then thankful for the days we have when we can go places and do things that seem normal and bring humour to the intensity.

Have a good weekend.  We are hoping for good health and restful nights.


Friday, July 18, 2014

Friday night thoughts

A sweet post-supper pause in Brantford, along the highway towards home. Even a noisy train zipping by adds to the magic of the moment.

It's Friday night, and it's been good.  Em and Soph were gifted a week at camp, and they loved it.  We picked them up this evening with Rachel and Janneke, and we had a picnic supper to celebrate. Both girls filled the van on the way home with stories and camp songs...which was music to our ears. Ralph and I spent summers during the last year of high school and throughout university working at camps as counselors.  We met each other while working at Scott Mission Camp, and we decided to carry that crazy love from camp into marriage. Fast forward lots of years: 

This past week away was a chance for the girls to be independent of home and family - and, let's be honest, independent of their routine that revolves around Rachel and Janneke.  It was up to them to share the fact that they have sisters who are severely disabled.  Here at home, it's possible for them to get lost when our family's schedule is geared towards their sisters; this was especially true in the first years of Rachel and Janneke's life.

So, as much as we knew this could be a really good thing, we were nervous to let our girls go and be... just be.  But the smiles and dirt and mosquito bites and endless songs and stories told us it was super. Phew.

It's a quiet house when the kids who sing, run, eat and talk are absent.  Ralph and I had a good week of working on home projects and suppers with just the two of us, but we were ready to welcome Em and Soph home by Friday.  And it was a sweet reunion.

Rachel had some better days this week with less pain, and both girls had their hairs cut today.  A special thanks to Shannon who is so gentle and good with the trims.  It's not easy to cut the hair of Janneke who'd rather dance than stand still or of Rachel who hates getting her hair done.

Have a lovely weekend.  We hope to.


Sunday, July 13, 2014

12 pics, 22 days

It's been a bit.  And it's been mostly fun.  We finished off the school year with the annual Easter Seals boat regatta in Port Dalhousie.  We were graciously hosted by the Cooper family again - such a treat!

* * * * * *
Rachel and Janneke finished their school year a week after Em and Soph. We said goodbye to a super team of teachers for Rachel; they've been alongside her for two years.  In September, she is transitioning within the same school to a different team.  Janneke will continue with her same team from this past year.  If it isn't obvious: We love the Niagara Children's Centre School family.

* * * * * *
New this year: Babysitting highlights this summer at the Pot home include rides on the porch lifts.  
With popsicles, of course.

* * * * * *

And, most recently in these 22 days, we camped.  It was one of our best camping trips since trying to make this crazy type of holiday work with four kids and two wheelchairs and feed pumps. Just to be clear, the updates from previous summers of our camping trips were ones that tried to find the joy in the middle of the stress.  This trip was all good.  Seriously.

Despite torrential rains, strong winds, longer-than-planned hikes in the hills, bear scares, driving into Pennsylvania trying to find the campsite (which was in NY state), the week went well.  We all slept better than we ever had on holiday.  Hurray!

Christina camped with us again, and her help made it possible for us to hike with Em and Soph, sit and have coffee without feeling rushed, read by the campfire, and go on day trips with the whole family.  

A huge part of this past week's success was the new trailer.  Harv (Ralph's brother) and Carol purchased a trailer earlier this spring with the intention of not only enjoying for their family holidays, but they also wanted to find something that we could adapt easily for our family.  Ralph redesigned Emily's bed to make a double platform bed that allows us to care for the girls in the trailer without back issues, and this bed was inserted in place of the table and chairs that come with most trailers.  In short, the trailer was recreated to be Rachel and Janneke's bedroom on wheels.... a great scenario for camping in any weather.  Forever grateful for this new opportunity and excited for (not dreading!) future camping trips.

We camped in Allegany State Park, about two hours south of our home.  It is a beautiful park that we hope to visit again.  The park was recommended by neighbours and a nurse who thought it could work for our family, and they were right.  Next time, we hope to reserve one of the paved campsites. Though a paved campsite doesn't sound quite like camping, the sites are shaded and private, nestled in the hills of the park.  The paved part pales in comparison to the surrounding scenery.

(that's Soph's star jump off the pier)

Each day was an adventure, including the trip home with a new g-tube insertion in the parking lot of Tops Supermarket somewhere along the 219.  Janneke's g-tube wasn't working, so we needed to put a new one in.  Christina did great, and I look forward to hearing the reaction of her prof when she shares that in her nursing courses this fall.

The not-so-fun part of the last three weeks is trying to figure out what is causing Rachel pain.  I spent time at McMaster - three visits (not in-patient) in the week before we left for camping.  She had an antibiotic that seemed to bring relief, but now we are back to pain again.  Here's hoping for more help and answers this week.  My mom sensors tell me it's a persistent infection that needs a strong swift kick.  Argh.

So... the rest of the summer awaits.  And we are thrilled with the success (finally!) of camping.  In hopes that Rachel feels better soon, we look forward to more adventures.