My name is Tina Williams, and I’m a writer, blogger, wife, and mom to a great kid with spina bifida. I have another blog about writing called My Writing Journey, with the occasional book and movie reviews; but this site is all about Lilly, and our lives together, living with spina bifida.
My daughter was born seven years ago, on February 8, 2009. My husband Jay and I found out about the spina bifida at 16 weeks through routine blood tests, and our world capsized. Those were incredibly difficult, emotionally fraught days; after Lilly was born, it became even more chaotic. As we acclimated to being new parents to a child with a disability, I found a lot of support and advice through various channels, like the Spina Bifida Association website, as well as other parents blogging about their experiences. But I couldn’t imagine starting my own SB blog at that time. Life was too chaotic; the experience was too raw.
After a few years, things settled down and life with Lilly became more routine. It was our normal.
I went back to work and started to write again. Last fall I started the writing blog, and I realized I loved it. But lately, a little voice inside has said, Do an SB blog about Lilly, and I’ve finally decided to do it.
I’m finding there’s so many things to say that I don’t even know where to begin. All I can do is just start and see where it takes me. With this blog I’m hoping to offer and seek support and advice, and just ruminate on various issues related to SB (and probably just parenting in general).
For those who are curious, these are Lilly’s “stats”: her SB level is L5-S1, she wears AFO’s, and has no shunt. She had her initial closure surgery at 2 days, and tethered cord surgery at 3 years old. She walks independently.
Our blog is called Beautiful Detour, after the piece by Emily Perl Kingsley called “Welcome to Holland”. It explains how it feels to learn your child will have a disability. You can read it here.
Thanks for stopping by!