It’s Spina Bifida Awareness Month. Israel has Spina Bifida and the form he has is called myelomeningocele. If you google “myelomeningocele”, you will read that it is the most “severe” or “serious” form of Spina Bifida. And if you go a little further and look up the words severe and serious, you will see words like grave, critical, dour, grim, terrible, awful and very bad. And when you look at just the words, it seems scary. So scary that a mom or dad might think that they cannot do this Spina Bifida diagnosis. A family might think that this is a sad and awful place to be. They might feel very lost and afraid because SEVERE and SERIOUS are never how we should describe a child. And maybe parents are wondering how they will ever be able to parent a baby that comes with such a grim and grave outlook.
But I want everyone to know that a child’s diagnosis does not define them. Your baby may have Spina Bifida, but that does not mean that their life is now serious and severe. Yes, it means extra care, surgeries and doctor appointments. And yes, sometimes you receive words from doctors with news you don’t want to hear, and it might mean a wheelchair, braces and therapies. But, your baby will be so much more. So let me share with you the face of Spina Bifida. Let me share with you the most “severe” and “serious” form of Spina Bifida. This is the face of Spina Bifida…
And as I’m looking at this face..this beautiful face of Spina Bifida, I’m seeing different words. I’m seeing survivor, courageous, loved beyond measure, and fearfully and wonderfully made.