It All Started with a FB Comment

It All Started with a FB Comment I belong to several groups on FB. I mean, don’t we all? I belong to two that are for cancer survivors, one is dedicated to those of us who had triple negative cancer.

I belong to that one where we all pretend to be ants. Don’t judge, it’s cute and fun and I joined during my six week quarantine in the beginning of this never-ending pandemic.

The others, the ones I’ve actually belonged to the longest are for parents of kids with 5p- syndrome, aka Cri du Chat.

It was on a post in one of the 5p- groups that I commented.

The original post was written by a writer with a niece with the syndrome. This author is writing a story with a character who has 5p- syndrome. The question the writer asked was whether a high-functioning 14 year old would be able to read a young adult story and understand it.

I was probably the 30th comment when I wrote that Olivia would absolutely be able to read and understand a young adult book. I explained that Olivia is high functioning, reads at above grade level and is able to understand everything that she reads.

My comment received almost immediate replies from a couple of parents with similar aged, similar capable daughters, asking if Olivia would be interested in communicating with their daughters. As we started talking back and forth, we all noted that our girls don’t have typical friends their own age. They just don’t seem to connect with their typical peers in a way that fosters friendships.

We exchanged phone numbers and Snapchat info. And so far, Olivia and I have spoken to Rosalie and her parents on the phone and O plans to do a video Snapchat call with her soon.

Olivia spoke really, really well on the phone. I was really proud of her. The girl we talked to sounded a lot like Liv, which was awesome. The parents and I compared notes and found that our girls have very similar stories. Their daughter was diagnosed at a younger age than Olivia but their early symptoms, their early health issues are eerily similar. So…this should be interesting.