Saturday, July 28, 2012

strength in weakness

It's been a busy few weeks here.  Living in renovations is not necessarily restful, though the time is nearing when we will be able to move Rachel and Janneke into their new room.  It seems the "almost done" phase lasts the longest.  No longer are we digging holes and knocking down walls - all sensational and noticed changes.  Now it is little details like painting the trim, cleaning out cupboards and finding light fixtures.  Thanks again, Nellie W., for painting the trim - a meticulous and time-consuming job that you did with good humour.

We have continued to enjoy the generosity of our neighbour's pool (thank you, Jacob and Louise), and we have witnessed Janneke's determination to get in the water at any expense.  She is now able to move in our arms and push her whole body towards the water.  As we approach the steps of the pool, she is almost a challenge to carry safely because she is so eager to get wet.  Though she is dependent on us in so many ways, her inner independent strength is evident as soon as we are poolside!

When I see the girls together in the pool, I am reminded of the blessing water gives - against gravity.  Emily and Sophia can carry their sisters and hold them without their weight and disability interfering.  Such a treat.

Being fed 24 hours does interfere with swim time, and we are not anxious to try more than 30 minutes off the feed pump.  After the half-hour swim with not being fed, we sit with Rachel and Janneke on the steps, having them hooked to their machines.  We have to keep two eyes and two arms on Janneke lest she slip in on her own will!

* * *

Rachel has been more tired lately - and having more issues with teeth grinding, among others.  We can't determine the source of her discomfort and weariness (pain? behavioural?), but I do notice that when she is listening to her music therapy session recordings, she does not grind her teeth, act uncomfortable, or fall asleep.  She loves her music!

We have returned to more massage sessions with our chiropractor, hoping to alleviate any muscles issues in her back (possible cause of the discomfort).  We were told last year that her scoliosis would gradually cause more problems as she aged, and that we would need to consider a brace for her torso.  Choosing a torso brace is a decision we have delayed making because we want to learn more about the side effects/long-term effects of wearing a brace and having a g-tube.  Still not sure what is best for Rachel....

* * *

This past week brought complicated emotions to the surface - another uncle of mine (Jerry) passed away.  This is the third uncle in our family to die within ten months, men who were very different from each other, yet they were special to me and our family.  

Death reminds me to step back and see the bigger picture.  When I sat alongside my uncle's bed earlier this week in the late evening, my eyes were drawn to the lightning storm outside.  The view from the window included all of the city of Hamilton and Hamilton Bay (like catching a storm from the top of a high cliff).  I could not ignore the power and majesty of the storm, of God's hand - nor could I ignore the feeling of my uncle's hand in mine.  An intersection of frailty and power.

It's a familiar phrase: sometimes He calms the storm and sometimes He calms His child. And as impossible as it may seem at times, God is present.  

Peace for your week.

Tuesday, July 10, 2012

we had a day....

... and what a day it was!  I can't decide what was more thrilling - watching Janneke tackle the water or seeing both Em and Soph tackle their fears by maneuvering around the obstacle course.  

We had an absolutely great day with the six of us.  Thanks to a local radio station, we had tickets to a local zoo/splash pad, and we spent the whole day enjoying the animals, water and being together as family.

We brought along the walker, curious to see what Janneke would do if given the option to explore.  It was soon clear that if we didn't hold the feed pump, she'd be soaking it in the water.

For a short time, we unhooked her feed and she was all over the pool, seeking out the spigots and fountains with reckless abandon.

Okay, so that's a bit poetic, but she truly was all over the water.  We had many curious looks, but I suppose it's not every day a kid takes her wheels in the water.  We assured the lifeguards that her tires were clean before wading.

Rachel was content to sit with me (see above in top of photo), and as time passed, she too put her hands on the gurgling surge of water in front of us.

A great day. A great memory.


Sunday, July 8, 2012

a swim and a sunset

We celebrated Canada Day with a swim- thanks, Elzingas!.  It was great to see Rachel and Janneke still fit in the floating fish, enabling us to swim without having to always hold them.  So far this summer, we've had a couple of good outdoor swims, thanks also to Aunt Carol, the Westerhofs and the Prins family.  

Because Rachel and Janneke are on a 24 hour feed to keep their blood sugar levels stable, we have to guard our swim time with the watch.  So far, we've done 30 minute swims - off the pump for 30 minutes and then hook back up to the pump after the swim.  We don't like letting that worry supersede our time in the water, and so far, it hasn't....  

Janneke absolutely loves it when the kids blow bubbles in the water at her and disappear under the water.  She watches their shape under the water - such progress from last year!  Both Rachel and Janneke love being with the others in the pool; during one swim, the kids were taking turns doing cannonballs by Rachel and Janneke, seeing what the girls would do if they were splashed.  How normal.

The fish give us a bit of security when the pool is full of swimming kids.  And who could resist turning the floating fish into some kind of creepy creature later?...

On Canada Day, Janneke enjoyed moving along the Elzinga's laneway, and we figured a way to keep her feed pump on the back of the walker (instead of pulling the IV pole).  Bit of a farmgirl, I'd say - though not so organic, considering her needs.

I wasn't sure how Rachel and Janneke would take in the fireworks, but they seemed intrigued by the lights, and Janneke tried to imitate the sounds of whoosh, pop, and crackle.

Gavin made a great firefighting volunteer, putting to rest even the smallest blaze.

* * *

Things are looking up in the new addition.

The flooring has been laid down, and Janneke has done her fair share of exploring every nook and cranny while Ralph paints.

Here's a view of the bathroom, a European design that allows for the whole room to get wet while we (or the staff) shower the girls.  There will be a hand-held shower piece that we can use on the girls while they sit in a shower chair/bed.  (Thanks, Carolyn, for your paint colour advice - and a huge thanks to the team at Dimensions Carpet One Floor and Home for the work on the tile and floors.)

* * *

A couple of nights ago, we caught the sunset at the top of the Glenridge Quarry. We like that place - a landfill that has been redeemed as a bird sanctuary with accessible trails. At the very top of the hill, we can see the mist from Niagara Falls, the stacks from the steel mills in Hamilton, and the CN Tower in Toronto.  

A couple of days ago, Ralph and I took Rachel and Janneke to meet with members of our endocrinology team at Mac.  They discussed with us the blood tests that were done in June - confirming what we knew already related to the low growth hormone levels.  What the team found interesting was that at the point when Janneke's blood sugars were very low, her growth hormone tested almost nil.  The end result? The endo team is suggesting we give both girls daily growth hormone injections.  Maybe there is a relationship between the low growth hormones and the low blood sugar levels?

We need time to think about this. When I asked for literature to support this idea, the team admitted that we are a unique case, so there would be no guarantee.  Being completely dependent on us for their care, the idea of Rachel and Janneke growing longer in length is intimidating - and makes the back ache.  Yet, the current plan we have with adding polycose (sugar) to their diet is making them grow heavier.

We hope to connect with at least one nurse from the endo team next week who can answer some of our questions.

Sometimes it is hard when we are told that once again, there is no pattern to follow with our girls.  Yet, pattern or no pattern, we are thankful that the girls' daily care is not so intense that we cannot distract ourselves by taking them to watch a sunset.

But...  lately, I've been envious of those who can go to a campsite for a week and have a cup of coffee in a worn-out lawnchair, while their children play independently.  At the same time, I am tired of asking for financial and physical support with finishing our home renovations, wishing that we could quietly take care of our own.

Perhaps I can be thankful that these feelings often collide with and are superseded by feelings of gratefulness and, strangely enough, peace.

One friend pointed out the longer feed routines have made our family more relaxed while visiting.  As for moving independently, I can celebrate the independence Janneke expresses in her walker.  She moves everywhere in church, and at home, she can do up to eight 360s (complete rotations), spinning her feet around and around.  Having people support us always with our girls and with the renovations is humbling, but as difficult as it is to continuously ask for help with money, time, and energy, we know living in community is a blessing.  We are so thankful for the support and do not take it for granted.

We are trying to allow our circumstance refine us- not define us.  God continues to shape and change us, reminding us that when we fall into our jealousies and frustrations, we miss the small joys that are ripe for the taking.  Faith in Him is not always easy, but it's what keep us from falling apart.  We know that we can't handle this - He can.


P.S.  Mim, your amazing meal on Saturday fed a team of electricians, our nurse, and our family  - and then our family again for Sunday lunch.  Thanks so much!