Garden Party

Craig seemed to have a better day today, despite lingering fatigue that kept him napping through the better part of the afternoon. I stayed over night in one of our sisterly hospital rotations -- one night on, two nights off. It doesn't really matter where we sleep really. We wake up and head to the hospital early enough that where we rest is irrelevant. I awoke (for the last time...we technically wake up for every early morning doctor's round), showered, and stepped out into the room to find Craig awake -- a rare occurrence of late. He is usually pretty groggy in the morning, but today was different. He was up and wanted a shower. I helped him round up his garments, beckon the nurse for saran wrap to wrap his hickman site and fentanyl patches, then helped him into the bathroom -- TWO towels in hand. The site of his distended belly was alarming this morning, though I've seen it every morning thus far. It seemed more taught and shiny from the tension, and stretched from just under his chest to down to his groin. His boxers hung lower than usual as they can no longer comfortably fit over his stomach. Still, he was moving around, towing his IV stand as he entered the bathroom. Shortly after he showered, I helped him snap his gown. He tried to snap the other side and brother had that sucker backwards, oddly snapped, and contorted. It was cute. I re-snapped and watched as he found his way to bed, and laid down. His final resting position was that of his initial position -- no adjustment, just flop down and snooze. His body fell crooked and diagonal across the bed much like Mom would lay. But, instead of correcting him, I simply lifted his legs to untangle the web of IV cords he had about his legs. I took note of that moment --holding both his legs in my arms as I swept the lines down his blue patient pants and over his brown stocking feet. Such a simple move yet so tender and fulfilling. The bonding moment warmed my heart and I watched as he drifted off to sleep.

The palliative care team spoke with him just after the nap and they were impressed by his seeming increase in alertness and decrease in some of the rather debilitating symptoms. It seems we are finding equilibrium --delicate as it is --with the pain, nausea and the like. They have also started him on Ritalin to help him stay awake and have more energy throughout the day. We haven't seen this manifested in energy per se, but when he is awake, he seems much more alert, more present, and more himself. Much of this evening he spent flirting with Emily, showing her his sassy, witty self we've loved all these years. These are the moments you live for.

Two nights ago and then again tonight, we bundled Craig with blankets and took him on a wheelchair walk down to the hospital gardens -- a restorative area complete with water elements, soft lighting, rustic yet inviting seating, and plenty of foliage. Two nights ago, a cool breeze stirred the long grass and frogs serenaded from afar as we sat by the water and talked. Writer joined us that night; we talked and laughed for what seemed like an hour before Craig's pain finally chimed in. Tonight, the breeze took on wind tunnel proportions and we could only achieve one full wheelchair lap before succumbing and turning in. But still, we filled that short trek around the garden with laughter, joking at how the hospital walkways and doors are not necessarily "handicap accessible". Go figure. Craig's wheelchair narrowly scraped through the doorway. Sure they gave him a wider than normal wheelchair but this day and age hospitals should fit for bariatric populations given convincing statistics that Americans are growing larger not smaller. Regardless, walkways should at least consider the likely scenario that a temporarily or permanently wheelchair bound individual might also have in tow his or her IV stand, and said stand only has sooooo much give of IV line before it tugs, tugs, tugs the body. The sidewalks should allow for the stand to walk beside the wheelchair -- not in front or behind like we've had to do. It's a careful dance -- one plagued by close calls and plenty of "whoa, whoa, whoas". Little thought while designing (say, universal design) would be much appreciated, though I have to hand out props for including a restorative garden and access to nature.

As exciting as my soapbox is, I'll return to Craig who (once inside) ended his little outdoor adventure with more sassy comebacks that were as refreshing as the wind. It's nice to hear him want to go to the gardens. And, it's nice to see him smile, to see his eyes sparkle as he's setting up his next comment. I love my brother and am so happy to be here to capture those moments with him.

If his symptoms remain managed (relatively speaking), he'll likely be discharged tomorrow. Here's to hoping.  ~E