I know nuh-sinkh!
I begin this post while sitting in the Ambulatory Care Building of BC Children's hospital. Apparently, I'm three hours early for my appointment. It's quite possible that it's my error - my mind's not exactly razor sharp these days. I had an appointment for 1:30 with Rheumatology, and I opened some mail a few days back that mentioned an appointmentment at 10:30 with our doc at Biochemical Diseases, but maybe that was the appointment in October. I know the plan was to coordinate visits. Whatever the case, I'm here with Trin, with three extra hours to kill. Thank goodness for the great silly installations they have in the clinic waiting areas, with wheels to turn chains, pulling bouncy balls up elevators to tracks, buckets and ladders, spinning sunflowers and sending cows looping round a moon with his smile on backwards.
Oh, yeah. And a TV. Sigh.
All of that helps pass the time and keeps Trin busy. But I'm still a parent, back again at Children's, hoping we'll finally get some answers. When our appointment comes, I expect we'll go through a very familiar routine. Weight height and blood pressure, then back to the waiting area. Then rewind/replay the clinical history for the Rheumatology Fellow. Watch Trin walking, do basic strength tests. Then wait for the Fellow to discuss with the attending Rheumatologist and possibly rinse and repeat. Then possibly do it all over again for the Biochem folks.
In the last few months again, there've been a few things more evident than before. Whatever it is, it's still subtle, still changing, and not going anywhere.
At the end of the appointment, I know nothing new, medically speaking. The new symptoms don't fit the patterns that would indicate a specific condition, and there are no further tests at this point beyond some rather invasive options that we don't wan to proceed with without stronger evidence that we'll actually find something.
Discouraging. But one thing I know. With all the varied struggles big and small, it's tough sometimes to find that sparkle in Trin. But when everything comes together and her imagination is sparked, she blossoms bright, like a flower in the desert.
In the Nevada deserts around Vegas, I was struck by the beauty of the desert - a place we tend to associate with insufficiency. I was especially struck with the contrasts of the desert surrounds with the intensity and boldness of the blooms there.
Three weeks ago today, I sat somewhat awkwardly for an hour and a bit and let an artist of a different medium capture that essence in a tattoo, my first, on my back shoulder. A desert cactus in bloom. It was a way of declaring indelibly that I love my daughter dearly, that she is wonderfully made, and that I want to be there for her on the road ahead, wherever it leads.
Oh, yeah. And a TV. Sigh.
All of that helps pass the time and keeps Trin busy. But I'm still a parent, back again at Children's, hoping we'll finally get some answers. When our appointment comes, I expect we'll go through a very familiar routine. Weight height and blood pressure, then back to the waiting area. Then rewind/replay the clinical history for the Rheumatology Fellow. Watch Trin walking, do basic strength tests. Then wait for the Fellow to discuss with the attending Rheumatologist and possibly rinse and repeat. Then possibly do it all over again for the Biochem folks.
In the last few months again, there've been a few things more evident than before. Whatever it is, it's still subtle, still changing, and not going anywhere.
At the end of the appointment, I know nothing new, medically speaking. The new symptoms don't fit the patterns that would indicate a specific condition, and there are no further tests at this point beyond some rather invasive options that we don't wan to proceed with without stronger evidence that we'll actually find something.
Discouraging. But one thing I know. With all the varied struggles big and small, it's tough sometimes to find that sparkle in Trin. But when everything comes together and her imagination is sparked, she blossoms bright, like a flower in the desert.
In the Nevada deserts around Vegas, I was struck by the beauty of the desert - a place we tend to associate with insufficiency. I was especially struck with the contrasts of the desert surrounds with the intensity and boldness of the blooms there.
Three weeks ago today, I sat somewhat awkwardly for an hour and a bit and let an artist of a different medium capture that essence in a tattoo, my first, on my back shoulder. A desert cactus in bloom. It was a way of declaring indelibly that I love my daughter dearly, that she is wonderfully made, and that I want to be there for her on the road ahead, wherever it leads.
posted by Coastal at
5:48 p.m.
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