18 July, 2010 11 p.m.
Dear friends and family,
Steve had a wonderful, restful Sunday. His fever came down overnight, and his spirits rose throughout the course of the day. These were helped by the fact that while his Dad was stretching his legs this afternoon, Steve moved his big toe! When I came back from putting the boys down for the night, he proudly showed me over and over again… a good strong movement in the right toe! I was squealing with delight! It may have been my imagination, but when I asked him to move his whole foot (yes, I push him!), I think I may have seen the slightest tremor. Perhaps the work of the big toe, but perhaps something more?
This morning Steve and I had our first good stretch of alone time in over a week… so precious! We read together, listened together, wept together and laughed together, and generally enjoyed the quiet, sunlit space of his room, with just a few straggling medical personnel – the sleepy Sunday crowd. Steve’s bed was rolled over to the sink, where his nurse and I hoisted his head to the edge, and he enjoyed a good, proper shampoo. Next week we are told we may expect a shower, in a special chair… we shall see!
These are the simple tasks of each day – what therapists call ADL’s, aka activities of daily living. Bathing in bed, grooming, dressing (they are gradually stretching his hamstrings out so that one day he will be able to sit up and lift his legs in order to put on his own pants), eating with the help of a simple band around his hand that allows him to hold a fork, and lately even a special contraption to practice a tentative scrawl with a pen. Even getting in and out of a wheelchair requires two nurses and a juggle of contraptions in the narrow space of his room – what Zephyr calls, “Papa flying!” Two days ago Steve was assigned a simple page of shapes to color in. Like the true artist that he is, he began to meticulously color a circle in a perfect orange, not a line out of place. Zephyr was of course immediately attracted to this particular activity, crawling into his lap to participate and making a fine mess out of Steve’s lovely handiwork! As you can imagine, even without other more specific therapies and education classes, the days fly by.
We have a host of relatives with us now, from Steve’s parents, to my mother from Holland, to Steve’s brother Mike and his family, to my brother David who flew in today from San Francisco. We are enjoying their wonderful company to the fullest!
Aidan and Jude continue to process, mostly in a non-verbal way, their ever-changing circumstances. It is painful for Steve to be unable to engage them physically, as this is the language of boys their age – wrestling, tickling, chasing them down for a hug and a kiss with a little teasing thrown in and the occasional voluntary cuddle between chasing and soccer and every other possible physical activity. Please pray for wisdom for us as we help them negotiate not just the changes in their beloved, playful Papa, but in their absence from their mama, their friends, and the Philippines, their home.
Today, I reflect on these words from the sermon on the mount: “Therefore I tell you, do not be anxious about your life, what you will eat, or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to to his span of life?… Seek first the kingdom of God and his righteousness, and all these things will be added to you.” The line that rings most clearly at this time is: “Is not life more than food, and the body more than clothing?” Watching Steve’s eyes shine tonight as he moved his toe, life was indeed so much more…
We are rejoicing today for a toe, and praying for an entire foot, fingers and more!