After publishing my post on Spina Bifida awareness month, I couldn’t shake the feeling that something about it just wasn’t quite right. As I read through the topics on my blog post again, I realized that the section on living with Spina Bifida was straight up awful. Yes, it shared honest facts about the different trials and diagnoses that people living with this condition can face. Yes, our life really is consumed with some of these trials and we are insanely busy trying to stay ahead of them and give Bryn her best chance at living her best life. But do these things define what Bryn’s and our lives actually look like? Not at all! So, I’d like a chance to redo that portion and show you what our lives truly look like.
What does living with Spina Bifida ACTUALLY look? It is strength – both in Bryn and in her parents. It is overwhelming joy in the smallest moments. It is inclusion and acceptance of all, better than we could have ever taught it to our older two kids. It shows you what is actually important in life. It is a daily celebration of even the tiniest step forward. It is better communication as a family and a fierce sense of protection. It shows you who your tribe is and fills you with gratitude. It is joy and love that we never knew to be possible. Spina Bifida has forever changed our lives. It is very often not easy, but it is always, always more than worth it. “For every time a doctor recommends termination because of quality of life, there are a million moments of quality life.” <3