One of the most important things I want to instill in Claire is a confidence that she is healthy and whole, just as she is. Spina Bifida, while not something we chose, has been part of her life from the beginning, and will always be part of her life. We can’t change the past, but we can focus on the present and the future, which are both bright, full of joy and discoveries and yes, also challenges and pain– just like everyone else’s life, too, with or without SB.
What frustrates me is, it seems the Spina Bifida Association doesn’t always share this mindset. I follow them on social media, and I regularly see these kinds of posts pop up in my feeds: Continue reading
Having just spent my morning getting myself and the girls ready to go to Spina Bifida Clinic, three hours and change trapped with two two-year-olds in one exam room, and having gotten them home without car napping and successfully into and asleep in their beds, I pondered a daytime adult beverage. Instead, I wrote a blog post. Continue reading
Just woke up from as good of a sleep as one can hope for in a hospital, cuddling my Claire Bear all night. She came through surgery like a champ, waking up happy after anesthesia, and generally being the most chilled out kid who just had brain surgery anyone has ever seen. Her surgeons say everything went great, and judging by the pressure her cerebral spinal fluid was under, it really was time for us to do this VP shunt. She probably has been having a headache from the pressure lately and we didn’t even know it. Now, her head should stop growing so quickly and the rest of her should catch up.
We’re super grateful for the excellent care we’ve been getting, as well as all the love and support from folks like you. It looks like we will go home this evening.