I’ve been working on another blog this past week about my daughter Lilly. Lilly has spina bifida, and I decided I was finally ready to write about the whole experience. Most parent blogs about their children with SB that I’ve come across start shortly after birth, or even while their child is in the womb. They’re grieving and scared, and need that outlet for support, or want to chronicle their family’s experience early on.
I couldn’t imagine starting a blog at the time of Lilly’s birth. It was much too raw and chaotic. I was content to read about other people’s SB babies, and derive some hope and support from them.
Now, seven years in, I feel like I have a healthy distance from the most acute emotions, although with SB, or any kind of disability, there’s a kind of perpetual grief running silently underneath the surface. We’re old pros now, but hurdles continue to crop up. I still need that support and advice from others, but am now ready to share my own experiences and offer my own support in return.
I’ve just made my first blog post on what I’m calling Beautiful Detour. The title is based on a prose piece by Emily Perl Kingsley, written when her own child was diagnosed with Down Syndrome. It tries to explain how it feels when your child is diagnosed with a disability. It’s fairly simplistic, when real life is complicated; still, I derived a lot of comfort from it. There’s a link to it on the About page in Beautiful Detour.
It’s still a work in progress, but the basics are up and running. I’m hoping to post to it once a week, while still posting here maybe twice a week. That’s enough to keep me busy! If you visit, I hope you like it. Feel free to leave a comment or follow the blog.