Cracking Down the Center (credit to WCL)

Why is there another diagnosis every fortnight?  We couldn’t even get through Owen’s first day of his new preschool without finding out about some new stroke-related malady that will likely affect him for the rest of his life.  Oh, and don’t forget the inept doctor who manages to look at him only from the lens (no pun intended) of her own specialty, rather than as a whole; and perhaps consider his copiously documented and complicated case history?!

Clearly, this is not going to be a well thought-out or well-written post because I’m pissed.  And frustrated.  And frazzled.  As my cousin always describes people in my current state – I’m about to crack down the center.  I’ve had enough.  But when is it really enough?  When will I actually just explode, or implode, or disappear altogether in a puff of smoke?

I’m waiting for it.  How has it not happened already?

Owen has been squinting his left eye and pointing at things that are far away for a few weeks now.  This is on top of the incredible light-sensitivity that he has been experiencing for almost two years, and the strange visual-based sensory issues that have begun to crop up.  I have taken him to the Opthalmologist since he was a few months old as a matter of course in the myriad of specialists we needed to see after Owen was born.  He was apparently quite farsighted after he was born, but a year later, that had corrected itself.  Since then, I have aired my concerns about his light sensitivity to his doctor who assured me that he was fine and that it was because he had “light eyes”.  That didn’t sit well with me, but to be honest, there were bigger fires to put out at that point, and I figured she knew what she was talking about.  

Oh Jamie. When will you learn?  I may not have gone to medical school, but it seems as though my maternal instincts did…

I took him back again this past June for the light sensitivity.  He turns off the lights in his therapy appointments, complains loudly and cries “Eyes, eyes” whenever we pass through a sunny patch and the sunlight is in his eyes, and we need to close the curtains and face him away from the windows when changing his pull-up or he squeezes his eyes shut and cries.  This did not seem normal to me…

Again, I was told that he’s fine and it’s because he has “light-colored eyes”.  It didn’t feel right, but I accepted it until he started squinting a few weeks ago.

We brought him in on Saturday and he has Strabismus.  After she told us that, she dilated his eyes and while waiting, I did as much research as one can do on a cell phone in a waiting room with “Finding Nemo” playing in surround sound.  It told me that he likely needed glasses, possibly drops or a patch, vision therapy, and eventually surgery was a good possibility.  Apparently, Strabismus is pretty common for children with Traumatic Brain Injuries.  

Everywhere Scott and I looked in those 30 minutes or so, stressed that treatment needed to start immediately in order to avoid further damage to his visual acuity.  This condition never self-corrects, and can deteriorate rapidly.

I started looking at eyeglass frames at the optometrist that shares office space with his doctor, hoping they were indestructible, and wondering how hard the fights would be to get him to keep them on.

I’ll admit that I immediately wanted to teach him to say “The human head weighs eight pounds”.  I realize he’s not a trained monkey; and to be honest I’d be thrilled if he said any of the words in that sentence, but damn, Jonathan Lipnicki was cute!

We went back in, she examined him again, confirmed that it was Strabismus, and even showed me how his left eye moved when covered and uncovered.

And then she told me that she’s see me in four months “to see how bad it gets”.

What now? 

Yep, she’s going to wait it out.  See how bad it gets.  Let’s completely ignore all of the ways that this has been affecting him for almost two years now (light sensitivity is one of the early warning signs, and geez – he had a stroke and that’s a huge risk factor for strabismus).

Let’s wait it out and see how bad it gets.  Let’s see how far we can push this poor kid who already has so much to deal with and see how much bigger and worse we can make this condition and situation.

Obviously, she hasn’t met me. Or at least that side of me.

I don’t “wait it out” for treatable conditions when early intervention is possible.  It could even be argued that this doesn’t even qualify as “early” at this point!  Why wasn’t she considering his case history all of the times I told her about the light sensitivity? What about the vision-based sensory issues he’s been having for almost a year?  

Nothing?  Really?

So we are going to see a specialist recommended by a ton of people on Thursday morning.  And I hope that he’s good, but I have no idea how to gauge that.  And Owen gets to miss his fourth day of school. And who knows what this guy will say, but I am hoping he says something other than “let’s wait to see how bad it gets”, and I think that’s reasonable.

I am just so overwhelmed.  When will we go some period of time that’s longer than a school vacation without something new?  Without some bombshell? I realize that this diagnosis isn’t tragic.  This isn’t the end of the world, but it does further complicate an already complicated world.  On top of that, this is something that will last for years, at least, if not his whole life.

It’s something that will cause him to look different, if not corrected – and there are times that even with surgery, it can’t be corrected.  Can’t he just skate by with one fully-working body part?

How am I going to fit vision therapy into the schedule of a kid that goes to school from 8-1 every day, goes home and naps, and then has four afternoons with 90-minute or hour-long therapies?

When is his break?  When does he get to be a kid?  When do I get to be a person?

The human head might weigh eight pounds, but I feel like I have the weight of the world on my shoulders once again.

Comments

  1. says

    Wow, what powerful writing. I’m so sorry that the doctor you saw wants to wait it out for four months. That really does seem wrong, especially with a condition that “gets worse” at all! Why wait for something to get worse!?? Ugh. I’m glad that your maternal instincts went to medical school and that you’re seeing a different doctor. And I hope he has immediate answers on what you can do NOW.
    I so feel for you. And I completely relate to “When does he get to be a kid? When do I get to be a person?”
    Sending hugs and good thoughts for a better doctor with better answers your way.

  2. says

    Found you through the amazing Love That Max. I know that frustration you feel ~ all too common for parents like us unfortunately … Your son is absolutely stunning, and he clearly has the advocate he needs in you. I have no useful advice I’m afraid, but just wanted to let you know it will be okay, you can do this. Try and find just a few minutes every day to separate yourself from him, to just enjoy a cup of tea or read a magazine ~ it’s really easy to lose yourself when you have to become medical expert / advocate / speech/language therapist / physio. I know it won’t help much right now, but everything you’re doing is helping him, and as he grows, you’ll know you made his world a better place.
    I hope things look up soon.
    Lucas

    • says

      Thank you so much, Lucas… I totally agree that carving out time for ourselves is crucial. I definitely do that – it’s just the thoughts creeping into my head about things that need to be done, or calls to be made, or appointments coming up – how do I get those to stop when I’m having “me time”? Don’t worry – that was rhetorical – something we all struggle with in this community… I hope you find that time for yourself as well – with a clear mind and heart.
      Jamie

  3. Rebecca Johnson says

    I have Strabismus also. I had two surgeries because my brain had learned to ‘tune out’ my misaligned eye, causing quick progression of my nearsightedness. Surgery is not necessaryily a garunteed he will never have problems again fix, as you know. If you do continue to look into surgery(which is sometimes the best option), you need to see Dr. Irene Ludwig. She’s the absolute best strabismus surgeon there is–she invented strabismus surgery! My family was blessed in that we lived only two hours from her home base (Nashville, TN) and she made trips down to where we live every few months. She is in very high demand and is hard to get scheduled with, but she is an absolutely amazing doctor and looks for the best options for each of her patients.

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