In 2015, I first started asking Grace’s doctors in the UK whether they thought she was developing scoliosis. They took the picture on the right and said no. Knowing what I know now, she actually already had quite a significant curve. Flash forward to moving home to Florida and meeting her orthopedic surgeon at Nemours...
Facebook has that great “on this day” thing where it reminds you of things you posted on that day in previous years. Sometimes I laugh, sometimes I think “wow I used to be such an a-hole”. About this time 7 years ago, Grace was going through her sudden Rett regression and we were in the...
When Grace was first diagnosed, this term “eye pointing” kept coming up and it didn’t make much sense to me. When Grace was still a baby and young “toddler” (who never toddled) she was addicted to her bottle and one of the ways we displayed her ability to understand us and interact with the world...
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...
Tomorrow, Grace turns seven. Seven seems like a really cool number to me. Seven days in the creation story. Seven deadly sins. Seventh Heaven. Seven seas. Seven continents. Seven colours in the rainbow. Seven days in the week. Seven dwarfs. Some people are actually named “Seven” (and I, for one, am hella jealous of people with...
Note: there’s video in this post. If you can’t see it, click here. Yesterday was Grace’s 5th birthday. Pretty much all birthdays have been plagued and unenjoyable. Except for last year when we spent her day at Disney World! C’mon…how can you have a bad day at Disney? Yesterday started pretty well and I thought...
