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!
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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....
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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.