November 18, 2015

I get questions allll the time about Elena.  I know people have shared with me, that they sometimes feel uncomfortable asking us, but I want you to know I am always happy to answer questions.  I’ve never had one that offended me (yet!).  Before we were thrown into this world, I had no idea about any of this, so I definitely sympathize with the lack of understanding about our situation.  But just a warning, you’ll always get the straight up truth.  I don’t sugar coat things and I certainly don’t paint rosy pictures.  Chad and I are both very positive people, but we are both very realistic too.  We have great hope for what Elena will achieve, but four years of this has given us the ability to have both hope and peace with whatever lies ahead.

1.  Does Elena eat?

Ahh, this is the #1 question.  And it’s one of the more complex ones!  When Elena’s G-tube was placed before leaving Riley, we thought FOR SURE that it was a short-term thing, only lasting a few months.  But then again, we had ZERO idea what we were really in for!  Elena’s swallowing ability was damaged by her injury (much like stroke patients sometimes) so we have spent four years helping her coordinate the complex physiological task of swallowing.  This is one where we still have hope that she will eat someday, but are fully at peace if that isn’t the case.  Long story short, Elena CAN swallow and do-so somewhat coordinated, but the girl has ZERO interest in eating.  That’s where the frustration lies.  She has proven many times over the years that she is capable of eating, but this is one of the very few areas she always fights us on.  I have a few theories on this but until she can tell us, we won’t know for sure.

2.  Will Elena walk?

And this is definitely the #2 question we get.  Short answer, we don’t know.  I believe she will to some extent.  But years of me watching her in therapy has made me see just how HARD it is for her to move her little body.  The effort is so great for her.  So I think she will, but likely small distances (think, around the house) and not without exhausting effort.  Again, hope here, but totally at peace with this.

3.  What does Elena do all day?

We got this one a couple weeks ago and I almost laughed!  Looking at her, I could see how one would wonder this.  So here’s our typical week:
Monday:  School & Private Speech or PT a couple times a month at home
Tuesday:  School with early pick up and straight to the Jackson Center for 3 hours of therapy
Wednesday: Outpatient OT then to the JC for 3 hours of therapy
Thursday: School & to Riley for outpatient Speech
Friday:  School
And scattered in there are doctor appointments, wheelchair tune-ups and miscellaneous.  This doesn’t include daily stretching, feedings (30-45 minutes x 3 a day), time in her stander/gait trainer and her daily dance sessions to her music.  She’s not typical in that we don’t do playdates, trips to the park, but you show me a four year old who is as busy as her!

4.  Why doesn’t Elena look at me or react to my voice?

As I’ve discussed before, Elena has a Cortical Vision Impairment.  This means her eyes bring in information that her brain cannot process in the typical way.  It’s been described to me as looking through a kaleidoscope, lots of color and shape, but an inability to distinguish things easily.  Her vision has improved with therapy, but like anyone with a sensory impairment, your other senses compensate for the damaged one.  So Elena relies heavily on her hearing.  As you can imagine, faces would be very complex to look at, they’re all different and constantly changing expressions make them quite variable.  So, she really only makes eye contact with familiar people.  You’ll see her try and kind of “scan” you but she struggles at times even with Chad and me.  If she doesn’t recognize your voice, you’ll probably get less of a reaction too.  I always think about me, if I was four and couldn’t see well, hearing an unfamiliar voice would be a little scary.  But don’t let her fool you, this girl is a social butterfly.  She LOVES people and the right people will bring out the hilarity in her.  If you’ve ever been around Elena & Uncle Evan, you’ll know that his burps and loud voice, will get her fired up!

5.  What does Elena like?

MUSIC!  Elena loves music though she has very specific taste that does not go outside of the Toddler Tunes/Disney genre.  Though Taylor Swift is a favorite and she will allow a few other pop tunes as long as they’re being sung by kids (Kidz Bop, what what?!).  She loves her friends at the JC and School.  She loves stories, bubbles, Mickey and Sofia, balloons and everything Miss Lisa (her OT) does.  Most of all, she loves being included.  She wants desperately to be part of the action, even when it’s things she can’t physically do.  It’s hard sometimes to tell because of her challenges, but I assure you she is a typical four year old and just wants to be treated like that.  It can be hard to know what to say to someone who can’t always respond, but we talk to her like she responds.  If all else fails, just burp, toot, sneeze or cough….those will ALWAYS get a giggle out of her!

6.  How do you know when Elena doesn’t like something?

Oh, she let’s you know.  There’s no mistaking it.  These include waking up from naps, Mom talking to other people, bedtime, music she doesn’t like and eating.

7.  I don’t know how you do it.  How do you manage it all?

This one is the simplest.  You just do.  It’s all we know.  It’s our child.  Are our challenges different than most parents?  Yes. Is it more complicated?  Maybe.  Life hands you difficult circumstances all the time.  For me personally, my faith is the source of all my strength.

I’m sure there’s lots more questions out there, but I’d say these are definitely the most asked.  I can’t speak for all parents of special needs kids but I would much rather you ask than stare or assume.  Staring and assuming are the WORST!  Maybe you’ll find this helpful.  The most important thing to remember when you’re around Elena is that she’s just a four year old kid.  She 100% knows what’s going on, even if she seems unresponsive.  One of these days she’ll be able to tell you your jokes are bad or that she hates playing “peekaboo”! Ha!

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This is Elena. Our Light. You can see all the goodness and joy that shines from those deep blue eyes. She loves sneezes, yawns, industrial toilet flushes, automatic paper towel dispensers and The Star Spangled Banner. Music is her everything, specifically Moana, Frozen (really all Disney), Queen & Taylor Swift. Nothing makes her squeal quite like swimming, fast boat rides and her two brothers in trouble. In addition to her megawatt smile, Elena reminds us to cherish the smallest of victories, to live in the present, and to daily dwell in a posture of gratitude for every breath and every blessing.  

More About Our Story

I’m Emmalee, an ordinary gal born and raised in the Heartland. Wife to Chad, and Mom to Elena, Calvin & Turner, I spend most my days ridin’ dirty (literally so much trash) in my minivan carting kids to and fro. When I’m not being a Momager, I excel at self-care, cooking gourmet meals my kids won’t eat and deep-diving all the feelings. Most days, my attitude is gratitude, just taking life one step at a time.

Emmalee & Elena

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