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I Once Could See But Now I’m Blind

I have a daughter who was born with Cervical Meningocele, which is a specific term describing her Spina-Bifida.  Life for LuLu hasn’t been all canned hams, and plaques.  She has been with us for three years and a couple of months, through that time we have watched her go through a surgery on her neck, and the various tests and physical therapies that followed, all of which she crushed…wasn’t even close, infirmity.  Though there was no doubt in my mind that she had a resilience that was above average, and those who know her have witnessed an energy for life that makes Iggy Pop look like Wilford Brimley–all diabetic and disappointed, there were signs that she was not all together “present” 100% of the time.  I always passed this off as her frenetic life choices overwhelming her ability to have some “smell the roses” time, or–even worse–laziness.  Ahhh dismissiveness, it’s been a while old friend, I see you’re still worthless.

Two months ago-ish we found out that my daughter has–what is referred to as–“Extreme Farsightedness”, a medical term that is succinct, if not very catchy, but all the noon-day brightness of Madison Avenue couldn’t put a shiny spin on the fact that my daughter sees things from 20 feet away as clearly as most people see them at 600 feet; so no need to waste the ink.  She is, as they say, legally blind.  I never considered it a possibility.  Maybe if she hadn’t been born so bright, I would’ve known sooner; or maybe if I’d been born a little brighter, I’d have known sooner.  Regardless, it was caught, and the doctors are satisfied that by the time she is able to drive, by stepping up her prescription in increments that allow her eyes to adjust and relax, she will be able to pass the vision portion of the test.  All of that is what it is, it is a part of the beautiful mess that my God has charged my daughter with living out, and I have no doubt that LuLu will do well in it, and have a great and powerful testimony as a result…a story of God’s faithfulness in the midst of trial.

As a self-involved daddy this news floored me initially, all I could think of were the words I’d spoken to her in anger when she wasn’t doing the seemingly simple things I had asked of her.  The irony of a situation where-in I blamed all of my daughters short-comings on her inability to take her time and observe things properly, while in reality I was the one who was missing something, was a constant source of judgment as I processed the news.  I felt horrible for treating my blind daughter as though she could see.  If there’s one thing I’ve learned as a parent, it’s that I am prone to these types of mistakes and my daughter is very forgiving of her daddy’s ignorance.

They say seeing is believing, and that is true and useful when dealing with interest rates on car loans.  However, some of the most important things in which we believe are things we may never see, or things we see and don’t realize.  My daughter taught me that she can love someone and not even know what they look like; she would often ask us, when encountering someone (after giving them a hug), “I know them, right?”  This seemed odd to me at first, but it isn’t so strange.  Everyone who takes the journey of love has no idea what it will look like; not on any practical level.  I learned seeing is not perceiving, or more to the point perceiving is not seeing.  There were a great many behaviors that I witnessed my daughter displaying, and I really thought I knew what I was seeing, but I was only seeing what I perceived.  I thought I saw a little girl who was in too big of a hurry to do what I asked or to notice what I found important, but if I lived in a world that contained few details, just ambiguous shapes, I would struggle with slowing my roll.

My little girl has glasses now, they’re adorable, and already she is showing improvement.  She doesn’t talk as much, she is too busy observing…making up for a lost four years, I would guess.  She doesn’t run into things as often, so that’s a plus.  She still has a massive amount of energy, accompanied by a hummingbird-like appetite for accomplishment.  That’s why God made benadryl toothpaste.  Kidding, I’m kidding; God didn’t make it, it’s my invention and I’m sure after jumping through some hoops with the FDA it’ll be on drugstore shelves directly.  Oh and after getting a clearer look at me, she still loves me…so she’s not shallow.


About pats0

Pats0 is a writer who is informed by a punk-rock ethos, and a hatred for group-think. He is the founding member of The Pirate-Clown Guild of Free-Thinkers, an aegis from under which he soils the internet with his thoughts. Welcome.

5 responses to “I Once Could See But Now I’m Blind

  1. Charleen Day ⋅

    I love this picture of you and Lulu! She is so sweet, and looks really cute in her new glasses! I am so excited for her to discovery so many new sights to see, and to enjoy so much more as time goes by! We are so blessed to have these little darlings in our family…..God is good!


  2. Nate

    Well done! Can we use some of your prototype toothpaste?


  3. Anna ⋅

    I really liked this post, it was well written and tugged at my heart!


  4. Jenne ⋅

    Great post! I often wonder about what information I don’t have when dealing with my kids. Expectations too high? Too low? It is good reason to hold ourselves back from reactions that would be clearly too harsh if we find out down the road that our kids really COULDN’T do otherwise


  5. Jbuzz ⋅

    Thanks for sharing you’re story. Love to see God’s love being shown through our kids. Been seeing that at my house too with bubba.You have awesome kids bro. Peace


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