Hi all and happy awareness month (it’s starting to feel like a holiday). 7 years ago this month, my husband returned from a trip to Nigeria and as soon as we met him on the train platform, his first words were “what’s wrong with Grace?” Rett syndrome for Grace wasn’t a slow progression. It wasn’t...
Category Archives: Personal
“I have only one thing to do and that’s to be the wave that I am and then sink back into the ocean.” -Fiona Apple This one day about 10 months ago…I was in Lulworth Cove. It was an extremely cold, windy day. Very few tourists and they’re usually there no matter the season. I...
“To beg God for healing is to say we have more compassion than He does.” The hubs and I were on TBN Meets with our friend Leon Schoeman talking about a variety of things including how we come to terms with disability and our Christian faith. Oh, and if disability doesn’t float yer boat, Steven...
Grace has the most spectacular carer/nanny, Anna. She takes Grace to her church on Sundays and recently, came back with this little story of triumph for us. It’s bittersweet and you’ll see why… Grace saw a little friend at church who was in her class at school last year. He (innocently) said to her something...
It seems that people must be Googling about how to photograph girls with Rett Syndrome, so here’s my answer to a recent email inquiry on the topic. So many families with disabled children avoid the photographer because it can be a really disheartening experience. I once had a newspaper photographer come to photograph Grace and...
Beware this post is nothing but guts and tears. If blood makes you queasy, run. And please don’t comment about me being ‘amazing’ or wonder mum or whatever. You’re all wonderful but this post is about that magical thing when one person can sit down next to another and simply say “me too”. Another thing…I have...
Note: there’s video in this post. If you can’t see it, click here. Oh my goodness the internet atonishes me sometimes. I posted a picture of Elijah’s letter to Santa on Facebook last week and this Father in Missouri got a hold of it and read it to the congregation. There used to be a...
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