Maybe the next time you sit down to a rich juicy steak, or feel the sharp tang of a crunchy red pepper burst on your tongue, or the salty enticement of fresh oysters plucked from the rocks, you might offer a quiet prayer for my little girl. But more importantly, remember again the invitation of Jesus to feast on himself, to savour him in all his fullness, to enjoy his abiding presence, to celebrate his friendship, to glory in his grace, and to marvel at his kindness toward us.

Until just a month ago, each night the routine was the same, I would take a container of premixed, medically formulated, milk that I had carefully measured out that morning, and pour the last of it into a soft bladder that would hang from a cold hook on a stand beside her bed. From that small bladder ran a thin purple tube that disappeared into a mechanical pump, reappearing to snake its way down to a specialised white tip.

When I finish priming the pump, I would quietly slip down beside my sleeping daughter being careful not to wake her. I would open her little pyjamas just enough to reveal the small plastic cap that sits just to the left of her navel, and just below the edge of her rib-cage. I can only see the external part of this life giving button, the rest sits below the surface of the skin and is anchored within a small slit through the wall of her stomach cavity. I would clip the white tip onto her feeding button, making sure it was secure and wouldn’t leak, then hit the start button—which would slowly run a measured amount of formula over a predetermined amount of time.

That was her fifth and final feed for the day. The next morning I’d carefully measure out another 24 hours worth of feed, and begin again. We’ve been repeating that daily cycle for five years and two months, ever since this precious gift entered the world 26 weeks into her birth-mother’s pregnancy. She didn’t always have a feeding button in her stomach, she used to have a nasogastric tube—a tube that ran up her nostril, through her sinus cavity, down her throat, and emptied out where her current button now sits. I’m glad it’s gone.

This precious girl was placed into our care because my wife and I have permanent care of her older brother. Both children have been impacted by their biological mother’s alcohol abuse, both carry damage to their brain development, both carry various physical abnormalities that shape their lives (and ours) in profound ways. Yet both are precious in the sight of their Creator, both were known intimately as they were knit together (imperfectly, some would say), yet seen, and loved, and purposed, by a sovereign and good God. I cannot fathom his ways in this mystery, but I trust his hand. There are many things I would change if it were up to me, if it were my purposes that should stand, but it is not up to me—it is mine to graciously receive what the Father gives in his wisdom.

I hoped that one day my daughter will be able to eat. I had hoped that one day she would sit with us and chase peas around her plate, sop gravy with a slice of thickly buttered white bread, spit lukewarm beans back out, savour a medium-rare steak. It felt like a far-away fantasy. Instead, her calorie intake was carefully calculated and delivered through a tube into her stomach.

Until one month ago.

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