Life with Spina Bifida - Update

Anna is currently taking antibiotics for her second UTI in as many months.  Back to back infections.  As a parent and caregiver of a child with spina bifida, I've tried to become an expert on symptoms of urinary tract infections and shunt malfunctions.  I feel far from an expert though.  Unfortunately, sometimes with SB kids the only telltale sign of an infection is cloudy urine and we all know cloudy urine alone isn't necessarily due to an infection.  Sometimes that infection is not obvious until it's obvious.

I went back and forth last week, second guessing myself.  In the end, we called the doctor.  I decided I'd rather be seen as paranoid than allow an infection to continue to grow.  Anna's urologist has drilled into us the importance of preserving her kidneys.  In the middle of debating over whether or not to call the pediatrician, I came across a blurb online stating that kidney failure is the leading cause of death for those with SB.  Exactly what I don't want to read.  My instincts were correct this time.  Something was wrong.  I still don't feel like I know what I'm doing though.  There's so much that goes into parenting and caring for these kids.  I have so much respect for parents of other special needs kids.  It is not easy.

The girls' dance studio performed for a nursing home back at the beginning of March.  I watch their dances all the time, albeit through the one way mirror from the studio lobby, but for some reason, on this day, I was hyper-focused on Anna during their ballet dance.  She's a good dancer and she knows what to do but I could see it wasn't easy for her.  Afterwards, I asked her if the dances were physically difficult.  If her muscles were fighting to move the way she wanted them to move.

"Well, yeah, everything is hard for me."

That just broke my heart.  I know things aren't simple for her but she doesn't often voice her struggles.  On most days, spina bifida is like background noise.  The hum from a working refrigerator.  We don't notice it because we're used to it being there.  It's with us everyday.  You don't even realize it's there until the electricity goes out and the silence is almost deafening.

So, yeah, we've hit a bit of a rough patch.  What would be a minor incident on it's own becomes much more when grouped together with other minor incidents.  Over the past couple of years, we've noticed that springtime seems to be the most difficult for Anna.  We have 7 weeks of school left (yes, it seems like a lifetime) and state testing is still going on.  She's physically and mentally tired.  She pushes herself in school, in dance, in life in general and we can see it wearing on her.  

Weather permitting, kids run/walk two laps around the track (which equals a half of a mile) as a warm-up for gym class.  The girls currently have gym every single trucking day.  Well, Anna doesn't want to be the last kid to finish on the track so she gives it her all and refuses to just walk.  Despite the physical challenge, she usually finishes in the middle of the pack.  I tell her there's no shame in finishing last.  Some kids are meh about it and decide to just walk.  They certainly don't care when they finish.

We've tried to never treat her in a different manner from her sisters and some say that may be why she's able to do everything she does.  She could easily pull the low muscle tone card and ask for accommodations in gym class but she would never think of doing that.  (There are actually accommodations written into her 504 plan.)  Yes, that's partly because she doesn't want to be seen as different from everyone else but trust me when I tell you there are kids who pull all kinds of crap so they don't have to finish those two laps.

I like to remind people of how the doctors didn't think Anna would be able to walk on her own unassisted.  How her neurosurgeon, who performed surgery to close her spine when she was only hours old, was amazed to see her hopping on one foot.  When I see people watching her dance, judging her, I want to hand them a note card describing her condition, telling them everything she's been through.  She was invited to join a dance team because she can dance, not because her sisters were invited.  It is a challenge for her and becoming more so each year.  I don't know where she'll end up but then again, no one knows what life will bring next.

I try to be realistic with the girls.  Yes, I tell them they can be anything they want in life but they've been raised to know that goals require hard work.  Never expect to be handed anything.  The girls brought home their Term 3 reports cards last week.  Allie and Emily made the high honor roll again and Anna made honor roll.  (I've asked them for permission to share this.)  Anna had all As, and one B (in math.)  Hydrocephalus presents many challenges in school with respect to organization and math skills.  Kids with hydro see math in a different way.  Actually, a lot of how they view the world is different than how you or I view things.  What appears organized to us (such as rows of books in a library), is still completely disorganized to them.  So sometimes math is very hard and I think earning a B is awesome.  

If you look up information for kids with hydro, you'll read that these kids are of "average" intelligence.  I always become slightly angered when I see that.  What does that even mean?  If you take a sample of the general population and test them, isn't the average result going to be . . . average?  I want these kids to define hydro, not let it define them.