Thursday, June 20, 2013


Well, let's first update you all on Edward's eye exam with Dr. Shields on May 8th. He was first case that morning, so 6:15 a.m. arrival time.  Eddie slept horribly the night before, waking up anywhere from 5-8 times.  This sounds weird, but I think he knew...He wanted milk, which is not allowed after midnight.... He asked and asked, and I said no over and over again. I  offered water.  He didn't want it. It was a long, long, night for my Mom and I.  And when our alarm clocks beeped at 4:30 a.m., we were barely able to roll out of bed.  But, we hustled into the car with our coffee mugs full, and a sleepy head in his car seat and drove into the city.  A few blocks away from Will's Eye Institute, my Mom recognized my nervously tapping foot and asked, "What's wrong?" and I said, "I feel like I am going to throw up."  It doesn't matter that we haven't been there in 5 months.  It doesn't matter if it has only been 1 month since our last appointment.  I feel sick to my stomach every time, fearing the unknown, fearing a silent regrowth, fearing the rug being pulled out from underneath of us... again.   Upon arrival and check in, Edward started sobbing and clung to my neck. He knew exactly where he was, and he knew exactly what was about to happen.  Eye drops, nasty tasting versed, doctors checking him, poking him, nurses carrying him away from us and back into the OR, and from then on IV sticks, until finally a vein is deemed okay.  A mother's grief.... to not be able to soothe and ease the fears of your child... Ugh, and then the waiting...... Finally they called us back after his surgery, and Dr. Shields told us he is STABLE.  Both tumors look the same.  The same is good. The same is great! They are never going to go away, so the same is good.  No new growth.  No seeds. No fluid. A six month pass until our next appointment...

Me (in total disbelief): Six months?
Dr. Shields (smiling): Yes, six months, he is doing great!
Me: No really, we can come back sooner.  Six months seems like a long time.
Dr. Shields (aware of our upcoming move to Cleveland):  Look, even if you lived across the street from Will's, I would still give you a six month pass.
Me (tears spilling over): Really?
Dr. Shields: Yes.
Me (as awkwardly as possible): Can... I.... hug, you?
Dr. Shields (as awkwardly as me): umm... Sure!

Thank goodness my Mom was there to kick me under the table to knock some sense into me and to get me to pull myself together.... MUSH... I am all MUSH these days... and yes I take anxiety medicine to sleep... because without it.....I wouldn't sleep.  These past two years have been rough, and I am constantly worrying about the next "rug" that will be pulled out from underneath our feet.  I hope as time goes on, Edward's eyes will remain stable, and we can "move on"?  I don't really know if those words are the rights words, but I would like to live a life that is less full of anxiety and more full of excitement.  I definitely know I worry more than I should, but I just can't help it.  I am hoping to get back to my old self... my tough Philly girl self that can take on the world while multi-tasking a million things, and still laughing my head off at silly jokes.  And I am hoping CLEVELAND is our new fresh start, where the "rugs" will.... well.... stay put! haha! Forever and ever!

And so we have moved, we have Ohio driver's licenses, we have a backyard, we have SPACE, we have a Shaker Heights address, we have a few new friends already, AND we have a playground we can walk to,  and Edward already loves it!

We would like to thank both of our parents, Matt, Melissa, and Nicole for arranging plans so that they could come to Cleveland to help us move!  We couldn't have done it without your help!  I have many more pictures to post.  I have to show pictures of our Kiawah beach vacation, the Cleveland Zoo, and more pictures of our house!   Next post, coming up sooner rather than later! Love, Katie