A Testing Process

Since the very moment he entered the outside world, Rufus has been tested, literally and metaphorically. Metaphorically because life in general has been a test for him. Where as some are granted a nice roll down a grassy slope until old age and decrepitude (I count myself amongst those), he emerged wearing crampons for the steep mountainside covered in scree that faced him. The doctors noticed his crampons straight away… early, small, dysmorphic and they wanted to know why. To be fair to them, they mostly wanted to give him a hand up that hill, a nudge in the right direction, but they also wanted to know the nature of the mountain facing him… Was it one he’d ever overcome? Was he fully equipped? Needed to check if we would be able to be his own mountain rescue when times got tough.

Rufus bears monument to the literal testing. Hands, arms, ankles and feet riddled with white marks. Lumps in elbows where infection got hold, heels that look like he has taken to walking across glass. The end of a central line still embedded in his chest. He is scarred, some would also say emotionally by that time- an aversion to too much touch, to being approached unawares. An ability to remove cannulation at lightning speed. And yet beyond the daily checks from his time in hospital to ensure the course of treatment what answers do we actually have? Symptoms- protein in urine, a kidney biopsy that shows irreparable damage. But no cause, no timeline, no unifying explanation.

As his mother, and sharing opinion of life in the grey with other mothers of undiagnosed children, I veer wildly between wanting to know more and also quite happily gently pushing with one hand on his bottom up that mountain, even though the summit isn’t in clear view. You see, testing starts at base level… Weights and measures. An eyeball and prod at sites of expected swelling, a check of his feeding tube, a tickle in his nappy to check his balls are in the right pocket. And he’ll fairly happily play along, tugging at the stethoscope on his chest, giggling at the cold. Then it ramps up a bit, not keen on blood pressure being checked. The blood room, that he instantly seizes at the sight of, a grapple and wiggle of a needle into a very wriggly boy, but we just about get through.  But perhaps this isn’t because we’ve become accustomed to these tests, it’s because we’ve become accustomed to the answers. Since he came home, the test reports have been fairly consistent, we’re not delving into the unknown so much. I even ask for them when they’ve obviously been so unremarkable as to not warrant any medication changes/different action plans. Just because I like knowing that, our bit of ‘normal’.

But as he climbs further, and it becomes evident that not only has he got a tricky mountain to pass, but that he wishes to take his own path, the tests get scarier. Do I really want my peanut to be held over the bunsen burner to see how long his flame will last? It came up, not long ago, that they wished to repeat an MRI scan. It was in the midst of an another testing process, that of miniest D, as these things always tend to fatefully fall. I cancelled. I was questioned. I lied. We couldn’t make it, which wasn’t a lie. But not because of other commitments. Because I didn’t want to know. Not yet. The words ringing in my head from his initial MRI. Some immature myelination, which is common. But we’d like to track his development, and retest in the light of that. And here was someone shining that light, a beacon, a flare. Time to test again.

An MRI isn’t a wee ball fiddle, or even a blood test. It’s under sedation. An anaesthetic. We’ve been here before- an upper endoscopy, a kidney biopsy. But these were for answers I felt able to handle… Can we help his reflux? What are his kidneys actually doing? But this, I’m not sure, because the brain is a remarkable thing. It can overcome many an injury. But it controls so much, do I want to know if his nerve centre is still a little faulty, if not a little more? Sometimes a little bit of knowledge is a dangerous but marvellous thing, because it still gives room for delusion. And what if, after another round of sedation, it shows nothing. Will I be satisfied even though it’s transpiring that something is afoot?! Are you veering with me?

Genetics. Who we are, you’d think we’d know. We were almost guaranteed an explanation for our medical mystery. It was just a case of waiting, after much scrutiny. But like that eponymous needle in a haystack, Rufus’s genes that you would expect to be wonky look straight. And a baby that should be on a defined route is well, wonky. But even though occasionally a wave of crashing wonkiness hits me square in the eyes, I’d rather not have someone detail them on a piece of black and white paper. I’d rather just see glorious technicolour Rufus. So that’s another testing process for another day. But I may get those wonky teeth of his checked by a dentist, because like the endoscopy and biopsy, it should just show me how to place my hand on his bottom again, and guide him lovingly back up that mountainside. In the fog.

Technicolour troos on a technicolour boy. Life in the grey is surprisingly multicoloured!
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