Perspective (Again)

As my last post alluded to, things have not been easy in patch-land or contact-land for us.  I've been wallowing in self-pity again (or self- and Tommy-pity).  It is HARD, no two ways about it.  I know deep in my heart that i am so lucky that this EYE is the only thing wrong with Tommy and that so many others deal with so much more.  I know that, and at times, I can appreciate that!  Just not when I'm feeling sorry for myself!

But, like life usually does, I got smacked up side the head with a heavy dose of reality recently.  I was home with 3 of my 4 kids- one of them Tommy, who happened to be sick and whiny (which is why I was home!).  Tommy didn't have a contact or patch in (grr, another long story that involves a long lost contact and another one that failed to arrive!).

This reality came in the form of a tornado- really, a tornado hit near my home last week- rare in our part of the country! A tornado!  Thankfully, we are fine.  (Thankfully, because this mama had no idea it was coming, hadn't listened to the radio or turned on the TV, and we are too far out in the country for any tornado sirens...)  The kids and I watched crazy wind (not abnormal for our area) and hail (well, a little less normal but it happens), but didn't know it was a tornado until much later.  (t started above our house, I didn't see the funnel cloud, and I admit that I am a little disappointed that I didn't see it.  It was visible from my house, had I looked out the right window!  Later people asked if I heard it... they all said it sounded like a train.  Well, I had a crying whiny 1 year old, a sobbing 4 year old (the wind broke her playhouse), and a sassy 7 year old milling about.  Uhhh, no.  I didn't hear anything but our normal ruckus.

Hundreds of people had major damage, many are without homes.  Thankfully no one was hurt or killed.  Thank-you God.

But really.  In relation to all that?  I need to keep perspective.  So it sucks that Tommy wears a patch and loses contacts and I lose my mind.  I have a wonderful family, healthy kids, and an intact home.  I really SHOULDN'T ask for any more.

Easy come... VERY easy go

We lost another contact.... yes, another contact.  Shortest time ever- 8 days.  It was such a nice little contact- +17.  The smallest we've had.  Patch time this past week was, well, less traumatic.  Not easy.  Never easy. 

We've now gone through 9 contacts in 11 months.  In case you were wondering, that is $2,250 worth of contact lenses.  To be fair, 2 of these are still sitting in the little bottles that I've been saving, 2 that we didn't lose but simply had a change in prescription.  One got sent back to B&L because it irritated Tommy's eyes...  But that leaves 6 lost.  Where do these rogue contacts go?  Are they hiding out somewhere with single earrings, caps to chapstick... my lost keyless entry system for a car we no longer have?  To think... I cried over that lost "key" for days and was stressed about paying $75 to have it replaced.  I could buy 3 of them for the cost of ONE contact!
Eight days.  Gone.  This loss was harder for some reason.  Maybe because we were doing OK... we were down to 3 patches per day (from 8-10) and it slipped in so nicely and out so easily.  First try,no tears, no red eyes.  Maybe because I feel guilt for letting him cry for a little bit during his nap.  That is likely when he lost it.  I let him cry because he NEEDED his nap and I NEEDED his nap...  And now the contact is gone.
Worse, I let a beautiful, sunny,  60 degree day (rare here in Michigan in March) slip by without enjoying it.  I spent the whole day inside searching... searching.  The crib, the clothes, the sheets, even his diaper in case he ate it.  I know, I know, but that is the desperation I was feeling.  I didn't find it.

Tommy gets a few days without the contact/patching drama.  And still I mourn that stupid little piece of silicone.  Curse that little white spot and curse that stupid little contact.

What a difference a year makes!

One year ago today I sat in our pediatrician's office for a routine check.  It was anything but normal.


One year ago that same pediatrician found a small imperfection in my baby boy's eye.  Or rather, she found an absence of something.  See: And so it begins


One year ago today I learned what a red reflex was... and what it could mean not to have one.
See: Red Reflex



One year ago today I couldn't look into my baby's eyes without crying.


One year ago today I mourned the fact that my baby wasn't perfect.  That is still hard to admit.


One year ago I wondered if I would survive the next 4 days until I knew what the diagnosis was.


One year ago I prayed harder than I have ever prayed in my life.   I prayed that my baby would have a cataract, not cancer (retinoblastoma).


One year ago today, I became obsessed with eyes.


Oh what a difference a year makes!


Today I only briefly even thought about the eye... only for a moment when I decided that the goop coming out of the eye meant that I couldn't put in a contact or patch.  I vowed to let him enjoy it.n  (He did!)

Today I changed diapers, fed children, picked up toys, did laundry...  normal mom stuff.

Today I encouraged a little boy to talk, to walk, and I tickled him until he could barely breathe.

Today is a MUCH better day.

Sick days

I hate sick days.  I never know quite what to do with Tommy when he is dripping goop from every orifice.  I mean, I know what to do as a mother: love him,wipe his nose, comfort him, wipe his nose, cuddle him, wipe his nose... but what do I do about the CONTACT.  Usually, goopy eye means no contact for Tommy (and no patch!).  After all, if I lose the contact as he rubs it out, it is automatically 3 or 4 days before another one comes in.  One day of contact safety surely is better than 3-4 days without.   But is this the right thing to do?  Am I harming his future vision?  No one knows, I know that in my head, but in my heart I worry every second that I miss.  This past weekend his missed 4 days. 4 days!  I'm still worried about this (hence the blog post).  He was sick- oh so sick.  Fever to 103.8, coughing, wheezing, sneezing, dripping, red goopy eyes, sleeping all the time.  I tried, really I did.  He has his requisite day off, then I put the contact in and the patch on the next day.  But- the patch was covered with goop, and his poor eye was so swollen, I started to worry about eye infections!  So out it came- and since his eye was so swollen, it was so hard to get out!  So, he got another day off, and then another.  Oh the guilt.  I know, I know, experts say it takes 2 weeks to truly harm his vision, but I still worry.

Snow

It's been a mild winter, or at least it had been until this week!  Tommy loves it outside, but I've always wondered if the bright light bothers his eye more than the "average eye".  In bright lights, Tommy gets a funny "Popeye squint" when it is too bright, which I think is just adorable!  (although at times it does worry  me just a little).   I know there are a million different types of sunglasses, but I have a hard enough time getting him to keep the patch on, adding one more layer to that seemed like too much work.  Plus, I am saving that battle for when we have to wear REAL glasses.

So, Tommy was not a big fan of the snow.  Life was good as long as I held him, but sledding?  Not so much.  Cold snow?  He could live without it.  He's happy to view the snow from the safety of Mommy's arms...

Or from behind the nice warm window!