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

Eye Am Lucky

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.


children, eyesight, gratitude, mommyhood, surgery


Little T.Puzzle plays with his portable Thomas track from Grandma in the waiting area.
Little T.Puzzle is confounded by the dot that marks his eye prepped for surgery.
The ride home after many tears and frustration over having to wear his eye shield.
Little T.Puzzle glares at me as I yet again admonish him from removing his eye shield. Once he ate some food, he was more compliant but his anger is still bubbling just under the surface.

Little T.Puzzle’s lens removal went smoothly. His recovery, not so much. He is younger then when his big brother went through this process and therefore it is harder for him to comprehend why he has to wear that pesky eye shield. He’s really mad, too, because his glasses won’t fit over it. I think he is experiencing more pain as well. He had more stray ‘strands’ surrounding the lense that had to be removed. The good news is that the lens  removal may help center his pupils. They are slightly off-center due to his ectopia lentis.

He is a trooper and I know tomorrow will be so much better.

children, eyesight, mommyhood, surgery

Eye Know

Our day was a success. Full Speed had his best eye test to date and little T.Puzzle has the greenlight for his lens removal surgery for his left eye.

I also uncovered the secret to getting exceptional behavior from little T.Puzzle. Simply send his big brother to spend the night over at Grandma’s. Little T.Puzzle is relishing the spotlight without his brother’s extremely strong presence to shift my focus. Of course I am being overly attentive to his every move, need and breath. I guess that’s what a pending surgery for your youngest kid will do to a mom.

I have a good feeling about it all. Then again, having seen his big brother attain 20/40 vision in his stronger eye (20/50 in his other eye!) when he was initially considered legally blind, I know anything is possible.

Possibilities are what will get us through this. For that I am certain.

Good luck, little T.Puzzle. We love you and wish you a speedy recovery!

I will post updates when I am able. Wish us luck!

children, eyesight, health, surgery

Times Two

Full Speed knows something is up. Little T.Puzzle’s first surgery is tomorrow and the air in the house is soaked in anxiety (mainly mine).

I’m taking both boys to the eye doctor this morning. As I picked out little T.Puzzle’s regulatory Thomas shirt for him to wear, Full Speed said he wanted to wear the same.

He never says that anymore. I think it’s his way of showing support for his little brother.

Maybe we’ll make it through after all….

Two is better than one
children, eyesight, mommyhood

School Supplies

Full Speed strikes a GQ pose before our Polynesian Resort luau at Disney

Is it normal to want to cry when you purchase your soon-to-be-kindergartener’s school supplies?

I am so not a fan of change.

In order to counteract my anxiety about his approaching kindergarten start date, I purchased Full Speed’s supplies early.

It hasn’t really helped that gnawing edge of dread in the pit of my stomach.

At least I tried.

The cashier was thankfully a mother and did not seem to question my slightly erratic and emotional behavior. It took a lot of concentration to keep my tears at bay while signing the electronic credit card apparatus at Target.

I also didn’t want to self-disclose too much since I know how uncomfortable it can be to have to listen to someone else’s issues. I’m the kind of person that seems to elicit strange, personal confessions from random people I meet during the day. It’s usually awkward when someone in the post office line starts telling me about their recent toenail surgery in detail or how their boyfriend won’t claim paternity of their baby (both true stories!).

So, I kept my thoughts of change to myself. I didn’t share that Full Speed would be starting kindergarten days after little T.Puzzle has his first of two eye surgeries. I didn’t share that I hoped that by simply gathering up all of Full Speed’s needed supplies early, that this would somehow make these two enormous events less intimidating for me.

Little T.Puzzle hams it up as one of his cousins places frisbees as ‘mickey ears’ on his head

Now, what else can I attempt to micromanage in the next couple weeks?

Any suggestions?