Tag: ophthalmology

children, family, gratitude, humor, kids, motherhood, parenting

Eye Am Lucky

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Sometimes as parents we blaze the trail without even realizing it.  I now am in a position to offer my hard-earned kernels of wisdom to Moms facing tantrums or the newborn stage.  I always offer my advice only if asked with the caveat that never, ever ask me about potty training.   That is unless you want your kids to be miserable and really old before being toliet-trained, then I’m your girl.

When I started this blog, I didn’t know that I would reach the tiny percentage of other Moms facing the challenges of raising children diagnosed with ectopia lentis.  My family has come so far since the early days of uncertainty surrounding my boys vision, that sometimes I lose track of the fact that we are ectopia lentis survivors and thrivers.  For those of you who are new to this blog, ectopia lentis is a rare, genetic condition which both my boys have, that compromises the lens of the eye and can severely impair vision.  The road to great vision has been long for my boys and with patience and the help of an outstanding ophthalmologist, we came through the other side of this disorder relatively unscathed.  By virtue of my boys leading ‘normal’ lives, we are helping other Moms know that ectopia lentis is only a small part of who their child is.

I would not change a minute of our experience if it in any way would alter who my kids are.  All those tears I shed, all the nights of worry about their future and each and every eye surgery has been absolutely worth it.   If ectopia lentis means I get to have these two guys as my kids, then honestly, I am the luckiest Mom around.

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children, eyesight, health, life in pictures, motherhood, parenting

Eye Hope So

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T.Puzzle gets ready for his letter read through
Full Speed moves into place for his eye exam

The boys had their six month eye check-up and even though it ended up being fairly routine with a good dose of positive news thrown in, I was kind of a mess.  As a parent if you have ever experienced a traumatic medical appointment for your child, it never really leaves you.  When Full Speed was first diagnosed with vision issues over five years ago, the initial prognosis was bleak.  Years of testing, surgeries and follow-up care have thankfully stabilized his vision and his future.

After all this time and all the hard work to get both boys to a place of good vision, I still can’t let go of that first, horrible assessment for Full Speed.  The logical place of my brain says to focus on how amazing they are doing but sometimes fear takes over.  I hold my breath every time either one of them does a read through of letters as their visual acuity is tested.  My whole body tenses as their ophthalmologist peers into their dilated eyes evaluating their physical structure.

Realistically, I may never fully get over my fear.  Life, parenting and health are too precarious for that.  To counteract life’s uncertainty all I can do is give thanks for every kind of health-related appointment that is routine.

That’s all any of us can do.

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Walking the Walk

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A typical Snellen chart. Originally developed ...
Image via Wikipedia

I had my annual eye exam yesterday.  I figured if I volunteer for Vision is Priceless and I expect my boys to go through all the machinations of maintaining their vision and eye health, then I should be first in line at to get my own eyes tested.  It was painless, quick and I finally ordered a pair of prescription sunglasses.  Trust me, daily driving in the Floridian sun demands dark shades.

During the appointment I felt disproportionately anxious and emotional to what was actually happening.  Here is why:

1.  I was awake.  Folks, that’s pretty much all it takes for me to feel disproportionately anxious and emotional.

2.  Having to go through some of the necessary and slightly uncomfortable steps of my eye exam, like the pressure check with puffs of air and dilation drops, made me sad that my boys have had to do so much of this stuff at such an early age.  I don’t like having to stand by and watch them cry as they get dilation drops or the doc struggles to keep them still to get a photograph of the inside of their eyes. 

The woman that had walked me through the first steps of testing leading up to my actual exam asked me if it was all going alright.  I confessed that I was thinking of my boys and their eye history.  Since they are very well known at the optometrist, she understood my meaning.

She said that actually I’m quite lucky that my boys  have been to exposed so much to doctors.  She said she has fifteen year olds that refuse some parts of the eye testing because they are scared, defiant and/or crying. 

So, my concern will no longer be feeling bad about their familiarity with all things medical and optical.  I will be thankful they are learning to respect doctors and any tests that are required of them.  My real concern is that soon, T.Puzzle and Full Speed will attempt to usurp the testers and run the show, equipment and the eye testing all on their own.

It’s a fine line for sure.

vision has never held these boys back, not one minute, not one second. We are very fortunate.

 

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Hold My Hand

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This week’s beautiful weather has afforded me the use of a bike to pick up Full Speed from kindergarten.  Mad Dog’s bike has a nifty trailer attachment that turns any regular bike into a tandem.  Full Speed loves it and so do I.  Whenever I greet him outside the school the first thing he says to me is, “Bike, today?”   His face lights up when the answer is yes.

As I grabbed his hand he shared some about his day as we headed to our bike.  He loops his hand through mine out of habit.  He doesn’t need to because we only cross through a crowd of people to reach our bike.  I don’t tell him not to.  I know my days of holding his hand are numbered.  I do my best to memorize the weight of his hand in mine and note that it feels fantastic.  Oh, how I will miss this.

“Mom, I had a vision and hearing test at school today.  I think I did really good for the hearing and I did just okay for the vision.  There’s a paper in my backpack that tells you all about it.”

I can’t help it.  My stomach lurches a little at the thought of reading his vision test results.  Just because I think his vision functioning is more than sufficient for school, doesn’t mean that the school nurse will agree.

When we get home I open his bag with trepidation and read the results.

20/50 for both eyes.  There’s a note attached that he needs an eye exam pronto.

Now my job will be to delicately explain to the school nurse that Full Speed’s had regular eye exams since the tender age of 20 months old and 20/50 vision is downright spectacular for him.

When I speak with the school nurse later I tell her only a slice of Full Speed’s vision history.   Over time I’ve learned that once you have a label, especially one with a medical diagnosis attached, it is hard for people to classify you as anything other than that.

So far I think I’ve been able to strike a balance for Full Speed.  I send him into new situations without disclosing any of his vision issues, and let everything unfold in its own time.  Right now, all he is to the world is an inquisitive and bright kindergartener.

And I’m the lucky lady who gets to hold his hand.

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Smooth Sailing

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T.Puzzle came through his second surgery and all looks well with both his eyes.  The doc checked the first eye while he was under and it appears his prescription improved a couple diopters (yay!).  She also said that as he grows his prescription may improve even more.  Imagine that!  More good news about my child and/or children and their vision.  We’ve come along way from ‘legally blind‘ and ‘your baby’s vision is worse than his brother’s’ type of information sharing with medical professionals.  Hooray!

This is what 'happy juice' looks like.

The overall surgery experience was much like I expected.  He was absolutely miserable during the eye drop portion (as was I) and he woke up madder than a hornet’s nest from anesthesia.   Nothing a solid nap (for Mommy, too!) and Cheerios couldn’t solve.

He is so brave.

Love you, T.Puzzle!

T.Puzzle checks out his awesome surgical cap situation.
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