Regrets

“Regrets. I have a few.  But then again, too few to mention…” — Frank Sinatra

I’m going to mention some, though.

I regret not being more forceful in trying to figure out what was wrong with Caitlin’s and Jarod’s eyes before Kender was born.  Ever since Jarod was a baby, and his eyes seemed to be going down the same path as Caitlin’s, we knew there had to be something genetic going on.  Obviously Caitlin’s eyes weren’t just the result of ROP and cerebral palsy.  I remember in the two weeks before Kender was born, we had an appointment with our pediatric ophthalmologist.  I sent Brian, both because I was in pre-labor and not really up to the all-day trip required, and because I thought Brian, with his better communication and people skills, might finally be able to wring an answer to this question out of her.  Even Brian could only get, “I don’t know.”  I still don’t know how, after more than 2 years of looking into Jarod’s eyes every 4 months, she never once saw that he had a retinal fold blocking his bad eye.  There are so few pediatric ophthalmalogists around here, though, that we never sought a second opinion.

I regret trying to patch Jarod’s eyes.  Although we now know that he has stage IV FEVR in his bad eye, and that it would never be able to just magically get stronger, at the time our ophthalmologist said it was just lazy eye.  We tried patching, but he fought and screamed and hollered every time we put the patch on.  (Obviously…we were effectively blindfolding him!)  Since just patching didn’t seem like it was going to do any good with a child who was essentially throwing a hissy fit the whole time, we tried using atropine drops, which dilate and blur the vision in the good eye to force the child to use the bad eye.  Remember, that bad eye had Stage IV FEVR, with a retinal fold that covered more than half of his lens capsule.  That eye was blind. But we put drops in his good eye to force him to use the bad one.  I know that we were only operating on the knowledge we had at the time, but dear gods I regret that more than anything else I did to my children in the name of medicine.

I regret the two surgeries that Caitlin had before receiving her FEVR diagnosis.  They kept insisting that she just had some strabismus because of her cerebral palsy, and if they just went in and snipped a nerve or a tendon here and there, they could straighten out her eye.  Caitlin has Stage III FEVR in her bad eye, with a peripheral retinal fold and a dragged macula.  These days, she is still losing vision in that eye, with active disease along the fold that is worsening the dragging and decreasing her vision.  The first surgery she had didn’t do the trick, so they wanted to do a second one, and I went along.  Again, I was only operating (no pun intended) on the knowledge I had at the time.  But those unnecessary surgeries are probably near the top of my regret list.

I deeply, terribly, horribly regret that I waited so gods-damned long to force the issue of Kender’s eyes, and his autism.  With his eyes, in his bad eye he has had a vitrectomy, a retinal membrane peel to pull a fold off his lens capsule, and a lensectomy after a cataract developed in response to the first surgeries.  Then the disease in that eye continued to progress, and he blew the pupil out (uveal ectropion).  Then he developed a bleed, along with glaucoma.  The blown pupil removed his ability for his pupils to contract in response to light.  If you’ve ever had your eyes dilated for an exam, and then walked outside into the daylight, imagine that NEVER GOING AWAY.  That’s what he lived with for 2 years, from the time he was 18 months until he was nearly 4, before I started investigating pain as a contributor to his developmental delays.  We finally got him started on atropine drops a year ago.  Atropine is a dilating drop, which seems counterintuitive (after all, he’s permanently dilated).  However, the problem with his bad eye is that, even though the pupil is blown and can’t contract, the muscles are still there, and they still respond to the light stimulus.  Even though that eye is now effectively blocked by the remnants and scarring from the last bad bleed, it still responds to light, forcing the muscles of the pupil to try to contract.  But they can’t, and so they cramp.  He was in constant pain. The changes we saw in him once we started the atropine drops were nothing short of phenomenal.  It was like he’d been stuck as a baby, and suddenly he started to progress.  He went from constantly being in a little ball, not interacting with anything or anybody, to finally exploring the world.  Gods, do I regret those 2 years.  What did we cost him?  What pathways in his brain might have solidified in immaturity, or atrophied from disuse?

I regret that it took so long to get Kender’s autism diagnosis.  Part of that was the confounding factors of his blindness, and the delays caused by the chronic pain.  However, I suspecting the autism from the time he turned three, and I took him to the psychologist who originally diagnosed Caitlin with Asperger’s.  That…that man…had the gall to look me in the face and tell me that my child was just stubborn.  That it was impossible for an autistic child to show affection for his mother, or to play games, or to explore a room.  I wish I could face him now, although I don’t know what I would say.  We have the diagnosis now, which gives us new tools to work with in helping Kender.  But that man…I trusted him, because he first looked at Caitlin and said, “No way,” but then he tested her and admitted that she was absolutely on the spectrum as Asperger’s, that her condition was initially clouded by the fact that she was a triplet with NT triplet siblings.  I trusted him, and so even though I felt in my heart that he was wrong, I waited almost another year before seeking out another opinion.  A whole year wasted, waiting, when we could have had his dog already by now, we could have known.  Maybe not my biggest regret, but it still makes me mad.

Yeah.  I have a few regrets.  Maybe some of our doctors should have them, too, although they probably never give me and my children a second thought.  One day, I know, I’ll get over it.  The PTSD from the triplets’ birth has faded after 13 years, although it is not gone entirely.  This will pass, too.  Someday.

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About solinox

I am a Wiccan priestess, a libertarian mother of triplets plus three, a wife and homeschooling mom to blind and autistic children, a fiber artist, and a Jane of All Trades, always learning and seeking to help.

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