I’ve had this conversation with prospective adoptive parents at least six times in six months, after they hear that my sweet two-year-old girl has Spina Bifida (but before they realize she has hydrocephalus).
Me: Oh, so, you have Spina Bifida on your medical checklist?
Them: Yep!
Me: Do you have hydrocephalus too?
Them: No…it’s scary.
I usually continue that conversation by saying, “You know, I thought it would be too, but it’s not that scary…” but that sentence isn’t quite right. To be honest, I really didn’t think that I would find hydrocephalus scary – but sometimes it is scary.
For those who may not know, hydrocephalus is a build up of cerebrospinal fluid (CSF) in the ventricular system of the brain, which can cause potentially damaging pressure increases in the brain if it goes untreated. It is very common in kiddos with Spina Bifida, particularly the type my daughter has (myelomeningocele). However, hydrocephalus can also occur due to brain injuries or malformations.
Everyday life with hydrocephalus is not very different than everyday life with any kid. We have made it through our first round of testing, our first round of unscheduled tests (shunt is still fine), our first illness, a couple of run-of-the-mill viruses, and six months of getting to know one another.
Hydrocephalus is a condition that likely will require lifelong management. It can lead to learning disabilities, particularly in the area of math, and difficulties with higher level processing. At times children with hydrocephalus may exhibit higher social skills and abilities than they actually possess (a language phenomenon often called “cocktail chatter”); this can mask problems and can lead to people misunderstanding the child’s ability level. Shunt revisions are common with kids with hydrocephalus, particularly as children grow.
All of that sounds really scary on paper. However, this is what I have figured out (as a first-time mom – you’re welcome world for my unsolicited parenting advice!):
Motherhood is scary.
Putting your heart and soul into another person and loving them more than you love yourself is scary. And if I wasn’t afraid that her shunt was malfunctioning (note to self: it’s not) I would be afraid that her leg looked funny or she wasn’t sleeping enough or she was sleeping too much or she ate too much cheese with lunch. So I can’t really say that hydrocephalus isn’t a scary special need, because it is. But so is childhood.
What’s scariest about hydrocephalus is it gives a name to a fear. It gives you something specific to worry about as a mother. It doesn’t change the child you love. It doesn’t make them more or less fragile (okay, technically, she can’t do flips or jump on the trampoline and there has been discussion about no horseback riding, but other than that – and she wants to, and I’ve told her to take it up with her neurosurgeon… so at least with hydrocephalus you have someone to blame for your neurotic helicopter parenting?). It’s not any less manageable than any other special need that might require surgery at some point in time.
And what hydrocephalus is? It’s just part of my daughter. It’s just one tiny piece of who she is. Without it she wouldn’t have her perfectly round head and her amazingly chubby cheeks (okay, maybe those are unrelated).
Without hydrocephalus, I would be missing out. I’d be missing out on the joys and thrills and yes, the scary parts, of parenting my daughter. She’s the most amazing kid I know – and I know a LOT of amazing kids. I’d challenge you to not shy away from the “scary.”
~ guest post by Kimberly
I am advocating for my daughter’s buddy from her SWI who has hydrocephalus (he is currently Tucker with WACAP). I put in a request to join the hydrocephalus group so I could advocate for him. If you have any suggestions on any other place I can advocate for him it would be greatly appreciated)