One thing those of us in the SB community are abundantly aware of is the shockingly high termination rates of babies with SB. There just isn't enough awareness out there about what living with SB is really like, what it's like to raise a child with SB. If you, or someone you know, is told that your baby has spina bifida you will be told a lot of very scary things. Most of them are not accurate and the rest are not as big of a deal as you might think (yeah, even that. really.).
If you read nothing else about Kingsley or SB, just know these two things:
1. SB is not the end of the world. Sometimes it sucks, but most of the time we don't think about it. It's just not that bad.
2. I have never for a moment regretted having my son. Ever.
If you do want to read more about living with SB, start with some of these:
First, a little perspective so that you understand that it was not always sunshine and roses. I was not remotely optimistic or happy during my pregnancy. I was miserable and that is pretty normal for all of us who get the big bad news.
It almost becomes a cliche that pregnancy is the hardest part of this journey, but it is the simple truth. His birth was like an awakening. The fog lifted, the lights came on, the nightmare ended.
This is a glimpse into life with an 8 month old with SB:
And what life is like for the other kids in our family:
A look at his first year:
The realities of the worst case scenario that are presented at diagnosis:
What life is like with a child with SB at 17 months old:
And what it's like for the other kids in our family: