TBI

Learning to See

October 7, 2016

Hi sweet friends.  I’m alive.  We are adjusting.  Life (or three kids, rather) is busy.  I’ve had computer probs.  I know I’m neglecting the blog, but I’m trying!  I have sat down no less than 5 times to begin writing a post in the last few weeks, only to be called back on duty moments later.  So bear with me friends!  And a big thanks to PBS Kids for occupying Calvin long enough for me to crank this out, not to mention a rogue daytime nap for Turner…Hallelujah!

Apologies aside, I wanted to share with you about Elena’s recent assessment by her vision specialist.  As you may remember, we have travelled to Pittsburgh several times in the last few years to see a doctor who is the best of the best on Elena’s vision impairment, (Cortical Vision Impairment) CVI.

A quick, simple refresher on CVI:  People who have CVI can physically see, meaning the eyes (structures all intact) bring in the visual input, but the brain has difficulty interpreting this input.  Simply put, the eyes see, the brain has trouble telling you what you’re seeing.  Therefore, we have to “teach” Elena’s brain what she is seeing.
We hadn’t been in a couple years.  With Elena starting Kindergarten and working on a communication device, we decided we needed to make time for a visit even with all that we have had going on the last few months.  And man, are these appointments ever worth it!  We always leave inspired, educated and honestly, emotional.

She assessed Elena’s vision and noted some improvement from last time, which is great.  Elena still has a lot to work on, however.  To achieve more progress in her vision, she needs to accomplish some things that are pretty difficult for her.  It’s all very complicated to explain, but we have great hope for her!  The best thing about these doctor appointments is that we leave with instructions on how to help Elena and what we can do to help her improve her vision.  We will be busy integrating these at a school and at home.  Just more to do 🙂

In leaving this latest appointment, I had a bit of an “Aha! Moment”.  After all this time educating myself on Elena’s vision impairment over the last five years, it had never occurred to me that Elena’s visual world would never look like mine. (This likely should have been obvious.)  I always had in my mind that our efforts to “improve” Elena’s vision was so that ultimately she could see the way that I see, which in hindsight seems so silly. For whatever reason in that appointment it clicked that all our efforts, all the hours of therapy, are to give Elena the tools to navigate HER world, not mine.  Sitting there, my mind reeled, processing that thought.  At that realization, I almost felt ashamed that I was just now figuring that out and had wanted her to experience life the way that I do.  Elena will never physically see the way that I do, or Chad does or her brothers do.  Her world will always look different as a result of her impairment, but what she needs from me is for my focus to be about teaching her what she does see and giving her the tools to interpret it.

Am I making sense?  I realize my sleep deprived thought processes can get a little jumbled these days!  For example, we’re teaching/working on helping Elena to walk. (She’s doing awesome, by the way!)  Now, it’s pretty obvious that Elena will never walk like me, but she’ll be walking no less.  It’s the same with her vision.  We know at what level she can see.  We have hope that she will continue to make progress in interpreting what she sees, but what/how she sees things will never look the same as me.  She will always have to work at deciphering her visual world.  Whew, got that?! 

One of the blessings of having a child with special needs is all the perspective it gives you, and sometimes a new one pops up out of nowhere, like it did for me last week.  God made us all with different perspectives, outlooks, gifts and abilities.  Instead of always getting others to see, feel and do the same as us, wouldn’t it do us all better to try and see OTHER perspectives and respect those, even if you find them totally unrelatable?  Sometimes it helps to get out of our own head, remove our own pride and selfishness and appreciate our differences.  At that moment in the doctor’s office, I was so proud of Elena, how hard she works, all her gifts and what she teaches me every day.  I’m thankful to learn about her world, how she sees and interprets it.  It’s totally foreign to me, but it teaches me so much.  There is so much VALUE in that.  

I’m so encouraged in this moment.  I have so much hope that we will be able to help Elena “see” her world.  I have so much hope in Elena’s physical, cognitive and communicative abilities and all the progress we’ve seen her make.  I’ll be honest, a lot of times it can be really difficult living our reality or even facing our reality, but a lot of times simply loving and accepting Elena the way she is, is just so darn beautiful and rewarding.  God continues to use her to stretch me, open my heart and teach me things I didn’t know I needed to be taught.  I’ve said it before, Elena is joy.  And come on, you have to appreciate the irony of me “seeing” all this at an appointment where a doctor is teaching us to help Elena “see”!  You can’t say that God doesn’t have a sense of humor!   

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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

Meet The Gals