Grace for Rett » Grace's Life with Rett Syndrome

Jesus makes things awkward

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: ‘’

Elli - November 12, 2010 - 10:20 pm

I absolutely love this phrase – “Grace is soaked in so much Jesus that she can’t possibly be unwell.” It is so perfect, and so profound.

Matt Bond - November 13, 2010 - 1:33 am

I love it!!! More awkward moments in Jesus’ name!!!!

Jenny - November 17, 2010 - 7:27 pm

Our God is an awesome God, and with him all things are possible. I am proud of you, it’s so hard to put your faith out there with someone and not know how it will be received. Grace is on my prayer list, I pray for her continual growth and health.

Joanne Thomas - December 15, 2010 - 12:10 am

Love it so much–lets just keep soaking her in more prayer and more of Jesus and just get her 100% well –and bring a few people into the kingdom along the way!!

Kelly Butler - December 27, 2010 - 3:23 pm

I absolutely LOVE this post. So much truth! Thank you for sharing this!! Hugs!

Karla Pitts - January 15, 2011 - 11:49 pm

Perfect! Jesus has His own ways of doing things.

Karla Pitts - January 15, 2011 - 11:49 pm

Perfect! Jesus has his own way of doing things.

Rhonda Elder - January 8, 2012 - 10:25 pm

I absolutely love this post. I get your photography blog thru email and just disovered this blog. God bless you and you continue to believe in the miracles of Jesus!

Melissa - October 23, 2012 - 1:11 pm

Hi. I just came across this website and as a fellow Rett mom, I thank you for sharing your Grace with the world. My daughter has Retts and I have had this type of experience with the doctors… I know that I know that the Lord is working in her and that is why she is doing so good. Doctors cannot accept our faithful views, but that is for them to deal with…I continue to believe in a miracle for my Sarah and all Rett girls. God Bless your little one.

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