Friday, November 28, 2008

Lessons from an Ocularist

"Jesus answered, 'I am the way and the truth and the life.' " John 14:6

Two weeks after Taylor was born, we added John Kennedy to our list of "groupies." He was and still is Taylor's ocularist. When we went to see him for the first time, Mike, Taylor, and I, my mom, and Mike's dad all dressed up for this all-important doctor's visit.

When we got there, we realized, John is definitely NOT a doctor, he is 100% talented artist. We left his office with Taylor's first set of conformers. Those conformers were plastic "things" that had "handles" about 1 1/2 inches long sticking out of Taylor's eye socket area. Those conformers opened up the space in Tay's eye socket and helped grow her forehead and skull area which is shaped by a baby's eye development in utero, specifically the first trimester. To get them in, we laid Taylor on the floor of his carpeted office and forced the plastics into the slits that were supposed to be eyes.

It was a year and a half of conformers and questions that ranged from, "What did you do to your baby's eyes?" to ,"My, what long eyelashes your daughter has!" which we'd get when visiting the convalescent hospital Mike's grandmother was in at the time. After that long time of growing and building Taylor's eye socket area and facial structure, it was time to graduate to prosthetic eyes.

The day Taylor graduated from conformers to prosthetics was the completed picture of the little girl I knew she was from the start. Seeing a “completed” picture on the outside with her prosthetics mirrored the completed image I had always envisioned as her mom. It reminded me a couple of years later of how God created us with "holes" that can only be filled by Him. Just like Taylor’s “holes” were only completed with perfectly fitting prosthetic eyes, God created us with a need and desire that truly can only be fitted with the grace and salvation of a relationship with His Son. Often times we try to make other things, relationships, ideas, volunteering, anything good or bad fit that gap. God sees His children complete, just as I saw Taylor complete, when He becomes our Lord and Savior.

Off to the Ocularist

What is an ocularist? Why do we even know? (Spell checker doesn't even know!) Sometimes I wonder if I would ever have a clue what an ocularist was if it weren't for Taylor. I probably could have used my Latin/Greek root study sessions for the SAT to figure some of it out, but simply put...the ocularist in our lives is John Kennedy (not related to THE John Kennedy for clarification ;0)

John is the artist who gives Taylor her "look," literally. He is the man who has made Taylor's conformers and prosthetics for the last five years. We just saw him this week, and Taylor has her new look for the time being. It is always a LONG day, and I usually get pretty down the days before anticipating what's to come. It's always unknown, but one thing is known. It's a bit painful for Tay and is extremely long and uncomfortable for both of us.

This time, we took Taylor's eyes out after about an hour. The shock never fades when her eyes first come out. I have to catch my breath, choke back tears, get my composure, and understand fully what this life of ours is. It really is like looking at someone/something else. I know it's Taylor, but I forget just what the real her looks like. Some of our family has seen Taylor without her eyes, but it really is more than most of us can take. Her fake eyes make her socially acceptable and have actually "faked" a bunch of people out!

(One of the moms from preschool who has known Taylor for over 2 years now was in shock last week when I told her about seeing the ocularist. She actually asked me why we had to see such a person. When I told her Taylor was born without eyes, she literally couldn't believe Taylor's eyes were fake. How different from the days when her prosthetics would move all out of place or would fall out. I'd just tell the babysitter or whoever else was with her to "put her eye in a baggie and I'll put it back in when we get back.")

So back to Monday, we finally got Tay's eyes out after hearing the whimpering, "Mommy, please don't," over and over and forcing back the lump in my throat as well as the tears that threatened to fall right over her precious face. Taylor and I headed out while John painted on the new irises (choosing a light blue to match Lauren's eyes) and guessed for pupil placement. We had such a good time enjoying every drive-thru we could find to pass time. We found McDonald's first and had a picnic in the car, Starbuck's next for me, filled the gas tank, and headed back to Eye Design Ocular Prosthetics.

John wasn't quite ready for us as Taylor's eyes weren't totally completed, so we went back out and put my sunglasses on Taylor's face. Then we were able to roam and do a little side shopping without completely stunning people in public! I had asked my prayer groups to pray over the day. When we finally were able to get started putting Tay's freshly painted eyes in, I watched God fully answer my prayers and the prayers that covered my hands as Taylor's new eyes went into their sockets on my first attempt. Yes, I get the honor of guiding those suckers in. (Again, not something you read about in What to Expect...or a Mom's Guide to Anything!) Taylor's new eyes aren't perfectly positioned, and we'll have to be back again in a few months, but to see my little girl "complete" again is something for which I am forever grateful.

Monday, November 24, 2008

Pin the Tail

There are always a few things that make me chuckle each time they occur. (I definitely have a bit of a warped sense of humor since delivering Taylor!) One of those times is when "Pin the Tail on Whatever" is one of the main games at a birthday party. I used to cringe when the game would come out. Now I watch the hostesses cringe when they realize Taylor is coming up in line. You can almost watch them thinking, " I blindfold her and pretend away the obvious?" or, "Do I mention the obvious and ask Kim if she wants to be blindfolded?"

I've definitely let the time elapse a bit longer at each party and kind of let the situation unfold itself. Depending on the nature of the relationship and how long we've known the hostessing families, I will answer sincerely with a, "Taylor, would you like to wear a blindfold?" or with a wise crack like, "This is one of those games Taylor has an edge in."

It's great to be able to take life a little less seriously once in a while. It's also great that others can chuckle with me in the awkwardness once in a while too.

Saturday, November 8, 2008

A Time for Everything

"There is a time for everything, and a season for every activity under heaven: ..." Ecclesiastes 3:1-8

Blindisms...what are they? Simply put...they're behaviors that blind people exercise to keep themselves stimulated since they don't have the visual input we have. For example, Ray Charles and Stevie Wonder move their head melodically to the music. Little children often push on their eyes. Some kids flap their hands, some rock...Taylor does it all!

We've been working on having Taylor "look" like the other kids in her kindergarten class. Now, that alone sometimes makes me laugh because she has no idea if she looks like the other kids or not, but it's important for her when developing peer relationships... Positive peer relationships. Sooo...for a while now, Lauren, Mike, the extended family, and I have been working on her to eliminate the rocking in particular. It gets a little nauseating for newcomers to watch her rock back and forth endlessly while carrying on a conversation, and we've gotten quite used to it ourselves. Lauren has been playing school with Taylor since last spring to get her used to sitting "criss-cross applesauce" as would be expected this year. Taylor mastered the sitting still at school.

Coming home from school in the first weeks, she would rock endlessly. We would ask her repeatedly to stop rocking and practice like she does at school. One day she was exasperated and declared, "I just have to rock! I don't rock at school, but I just HAVE to somewhere!" What better place than in the comfort of our own home, and everyone else's home as well?

There really is a time and a place for everything. I love learning some of the best lessons from our children. What is it time for you to do?

Thursday, November 6, 2008

All the Colors of a Rainbow

There are a few things that still make me tear up thinking about them...knowing Taylor cannot see them. The parades at Disney are one, lights at Christmastime another, and the beauty of a rainbow a significant third. Rainbows have always been one of my most favorite things to see. Long before I realized it was God's promise He would never flood the earth again, I loved to stare at the "ROY-G-BIV" arch in the sky with my dad. I used to look for the beginning and the end of one bow and hope to find the pot of gold at the end. On the rare occasion I'd see both sides, I'd run toward the "closer" end hoping to find that end of the rainbow and get the promise of gold.

Now, I realize rainbows are just one of those things I'll never really truly be able to explain to Taylor because they are a purely visual phenomenon. I have always been awed by their striking beauty, their magnificence that illuminates the sky and arches through those billowing clouds. They are absolutely stunning! I still can't even try to explain one to her without choking up. (Of course, I can't explain Disney parades either which is why you'll probably find me in sunglasses at each parade no matter what time of day or night that show is at! But there are plenty of other sensory effects at Disneyland to keep her attention!)

Sometimes, I feel the same way about my relationship with God as I do about explaining a rainbow to Tay. It is the most beautiful thing in my life, but to others it's nothing they can relate to. I wish I could explain to others just how awesome and illuminating a relationship with Jesus is, but I also realize no matter how much explaining there is, until they see it and want to experience it for themselves, it really isn't all that beautiful. I also understand that I won't see all the colors and the whole rainbow at once. I get to see parts of the rainbow all the time. It's beautiful all right, but the whole picture will only be complete when I'm face-to-face with the creator of those rainbows and the One who created me.