Grace had her 6-monthly appointment today with the main consultant paediatrician who diagnosed her last year, Dr. L. She is the most gentle, lovely, kind person we have dealt with in this whole process and we look forward to seeing her every time.
We know Grace has had remarkable improvements in her life recently. She’s no longer hypotonic (floppy). She is very vocal. She is so emotionally engaged in the world around her. And now with her glasses, even more so. But I guess it’s a much more remarkable improvement than we’d realised because of course, things aren’t so obvious when they’re gradual in your daily life.
So at the end of this appointment, Dr. L sits back in her chair and just says, “I’m so amazed at how Grace is. She is so so much better than ever before.” She went on to say that she didn’t have an explanation and couldn’t believe or understand how well Grace is. So she asked, “Do you know why she’s so much better?”
Steve and I look at each other. Is this the time to finally stop beating around the bush? Time to stop pretending to be surprised that she’s gaining weight, getting stronger, babbling with consonants and not just open vocalisations? Yes. I say:
“Grace has a very strong and substantial amount of prayer and love in her life.”
“Yes, but can you think of anything else that has made her so well?”
“No. It’s the love of the people around her who never stop believing.”
“Yes sure sure but anything else?”
Nope. Nothing. Nada. If anything, my lack of exercises, the difficulty in dusting off the standing frame from time to time, letting her take a ‘break’ from the sleep system. You’d think if I had to lie about anything, it would be why she wasn’t progressing. But no, I go ahead and finally tell a dr. that Grace is soaked in so much Jesus that she can’t possibly be unwell.
And therein lies the next 5 awkward moments which inevitably follow when what you’re really thinking is quoting Jesus himself: ‘it.is.finished’