Monthly Archives: October 2012

Awareness Month

It’s October! That means it is Spina Bifida Awareness Month.

I’ll be honest…I often forget. I don’t think about it. October sneaks up on me and I’m like “oh, yeah…I should try to help in that awareness”

My daughter is on the mild end, as one affected by Spina Bifida, a neural tube defect that affects some 1,500 babies every year.

Spina Bifida knows no color boundaries, nor financial state, nor city or state. It does not have to run in a family. It just shows up. But once it is there, it is always there. It is then carried on, with a possibility of coming out on another child.

As I said, my daughter is on the mild end. She was born with a lipomylemeningocele around the sacral region of her spine.

That means, she did not suffer from hydrocephalus. She did not need a shunt to control a build up of fluid on the brain.

She was not born with an open lesion.

She did not need skin grafts in order to close things up.

She ‘simply’ had a fatty spot that covered a malformed area of her spine. An area that was operated on and ‘fixed’, but it is not a permanent fix. She is not cured.

She still deals with Spina Bifida every day and will continue to for the rest of her life.

Something I am reminded of as I watch my 22 month old attempt to walk on her own. She still waddles while holding our hands or cruises along the wall. She does not yet take independent steps. All of my other children were walking (or running as the case may be) by one year. Here we have nearly doubled that and still no independent steps.

It was hard to see her peers, friends’ babies born around the same time as LilBit, pull to a stand at 9 months. Then they take their first steps at 12 and 14 months. And my LilBit is still back here thinking about straightening her legs, putting some weight on them, to semi-support herself in a stand, as we fully hold her arms, hips or torso.

Then come her younger friends. The ones 6-12 months younger. They now pull to a stand and take steps on their own.

These other kids can easily and independently move both of their legs at will. You can point to one foot and ask them to lift it, and they readily will. Not my LilBit. She loves to lift her foot for me to tickle her toes, but that only works for one side. The other side she hasn’t much control over. You can see her concentrating, looking at the foot she wants to move, but it doesn’t. Instead, the other, easier side, is moving.

These other kids will lift one foot and then the other as they walk across the room or up stairs. Not my LilBit. She will lift one, but mostly drag the other.

Her close in age peers are now moving into the realm of potty training. A thought we can’t even begin to entertain at this time with LilBit. At this age with my other children, we were introducing the concept. Some were already there and done. Some were just catching on. Some…weren’t sure. But LilBit is nowhere near. It gets frustrating at times because we have to change so many diapers a day. Her bladder and bowels are affected by Spina Bifida. She has no control that we can tell at this time. She does not feel that ‘urge’ to go. So where other kids her age are beginning to catch on to that sensation and can ‘fill a diaper’ when it is time to go…she doesn’t. It just happens bit by bit as her body deals with it. Which means, a spot here, gotta change her, a spot there, gotta change her. You never know if she’s going to ‘finish’ within the next 10 minutes or two hours. So you can’t just let that spot be. So, we constantly change diapers. And like I said, at almost two, this is generally the time when we get to slack off on this aspect. We’re getting OUT of diapers. But, not with my LilBit.

It can be depressing at times as one inevitably compares to others. As parents we can’t help but do that at times, can we?

But I know my LilBit is making great strides. She *is* improving. She *is* learning to walk. It’s just taking her longer. She has to work harder because that one leg doesn’t want to work as much.

She’s been in physical therapy. She wears her brace for support and strengthening her leg muscles. She will now cruise all over the house holding onto the walls or furniture. She walks well while holding our hands. She has even gone to just barely holding one hand. At times I can convince her to hold onto a toy, as I hold the other side. She supports her own weight much better that way. She’s just not confident she can do it, so often reaches for a hand.

Just this past week she has been letting go of the couch, turning around and trying to take a step or two. It’s more like flailing lunges before a *splat* to the floor. But it’s an attempt none the less.

She’s getting stronger. She’s getting more confident.

She’s just not *there* yet.

So, I am here, sharing her story, our ups and our downs, to show you the face of Spina Bifida. It’s real. It knows no boundaries. There is no cure nor preventative measure. Yes, research has shown folic acid is helpful. But just because you take plenty of folic acid does not mean your baby will not be born with Spina Bifida. It still happens. A lot. But, being the ‘rebel’ that I am, I will also go so far as to say, just because you do *not* take your folic acid, does not mean you *will* have a baby with Spina Bifida, either. Personally, I *would* err to the side of taking the folic acid in an attempt to prevent. But know it is not a guarantee. It’s a ‘freak accident’, quite honestly.

Just be aware….and know that it is *not* the end of the world. Don’t be frightened if you hear those words. Don’t assume the worst. Don’t expect a horrid, trying life.

Instead, see the wonder and the blessing of this life. And what they can teach you. 🙂 Give them life and let them give you the joy. Prepare to be blessed immensely!