Wednesday, March 12, 2014

From A Girl Named Charlie: What I Know

Before I ever had kids, I used to walk past the severely and profoundly disabled class on the way to my room every day and think, Man!  It really takes a special person to be a special ed teacher for those kids.  I admired their dedication and never considered just how much physical work went in to caring for those students day in and day out.  I became friends with one of the severe and profound teachers and was enlightened at all the preparation that goes into the curriculum for students with major physical and mental disabilities.  It astounded me.  I was in awe.  I couldn't imagine what the parents of these students dealt with after hearing what the teachers did for them.  I remember thinking, There's no way I could ever do that!  It really takes a special person to care for such special children.  God bless them! Parents of special needs children are extra tough.  I can't even imagine how strong they must be to deal with their child's disability on a daily basis.  

I want to slap my former self across the face.  

Ten years later, I am the mother of a child with special needs.  I hate it when people tell me they don't know how I do it or they "couldn't do it" or "God only gives special children to special parents" because it's simply not true.  After two years of raising and caring for a child with non-typical medical needs, here's what I know about myself:

1.  I'm weak.  I realize this and I'm okay with it.  When Liv was first diagnosed, I thought it was so important that I appear strong and pulled together.  I managed to talk about Spina Bifida and all it entailed with clear eyes and a steady voice, but inside I was a shaky, crumbling, fragile mess.  I constantly heard people say that God won't give you more than you can handle, but I questioned whether or not I could handle her diagnosis.  I didn't feel equipped, emotionally or intellectually, and sometimes I still don't.  The prospect of an impending surgery or new care routine still makes my head spin and my heart race and the fight-or-flight instinct to kick in.  Sometimes I want to take my family and run away from Spina Bifida, and if there were aspects of it that weren't potentially life-threatening (like shunt and kidney issues), I think I would. 

Me that first night after diagnosis

2.  I'm more parts "normal" and "frazzled" and less parts "amazing" or "dedicated" or "(fill in the blank)."  I'm normal because I'm a married, working mother with two kids and a moody dog.  I'm frazzled because, well, I'm a married, working mother with two kids and a moody dog.  Thankfully, right now SB tends to take a back seat to everyday life, and for that, I'm extremely grateful.  If you consider being almost eight months pregnant and getting myself and two kids dressed and out the door every morning on time "amazing," I'd be okay with that.  Otherwise, I'm just a mom who loves her kids, SB or not, and does whatever it takes to ensure they are happy and healthy and taken care of.  That's the type of dedication required of every mother who cares.
3.  I'm pretty happy.  This was the scariest prospect for me when Liv was diagnosed, and something I'm so ashamed to admit.  October 6, 2011 was (and still is, if we're being honest) the saddest day of my entire life.  I have never, ever, ever felt a deeper despair.  I didn't know I could feel such crushing grief for someone I'd never even met.  When I pictured our lives with SB, I didn't see happiness.  I saw pity from others, endless medical problems, and struggle, struggle, struggle.  A time-machine would have been nice, or maybe a visit from the Ghost of Christmas Future, to show me that not only would we indeed laugh again, but that it would come much sooner than we thought, long before Liv was even born.

See?  She's happy.  I'm happy.  We're all so freakin' happy!

4.  Most of the time, I only get half of my stuff done.  This is kind of in reference to the whole "I don't know how you do it all" sentiment that I hear a lot.  It seems like I take Liv to the doctor all the time because she has so many specialists, which would be enough to boggle any busy person's mind.  Truthfully, the only doctors she sees are neuro, urology, and an orthopedic specialist.  Her pediatrician visits are growing fewer and farther between now that she's two and the developmental pediatrician is once every six months.  Most of the time, my house is half clean, my laundry less than half done, and the dishes are partly put away.  I justify this by referring to something I read on Facebook that said, "Cleaning house when you have kids is like trying to brush your teeth while eating Oreos." 

This is crap I did not get done.         

6.  Day to day life around here is pretty routine and boring.  And I'm okay with that.  Our days pretty much look exactly the same as the one before, with the occasional adventure sprinkled in.  I'd rather be living an uneventful life as far as SB is concerned than a colorful roller coaster ride that takes thrilling twists and turns, always leaving us guessing where we might end up next.  We're just doing life, raising our girls the best way we know how, learning along the way. 


Chelsea said...

Hi my name is Chelsea, I am sort of new to your blog I stumbled on it during a search for something and I am glad I found it. I am in my 20's and have spina bifida also. You are a great writer and your posts always make my day!

Kristen said...

Hi Chelsea! Thank you so much for your kind words! I love hearing from people who enjoy reading what I write. I also love hearing from adults with SB since I only have experience with babies and toddlers at this point!

Chelsea said...

I look forward to reading and learning more from others who are dealing with the same thing, each child is different so it's interesting to me to learn from others experience with spins bifida.

Chad said...

Hi my name is Chad, and I'm new to blogging. I came across your blog during a Google search. I myself was born with spina bifida, and at 43 years old I'm doing okay. I thoroughly enjoy reading your posts, it's very informative. I recently decided to start a blog feel free to check it out.

Lisa said...

I couldn't have said this better myself!

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