“The quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise.” – Jerry Sittser
Settle in people…this is going to be a long one!! But completely worth it if you can make it to the end – I promise!!
After speaking with a neighbor of ours that I had just met the other day, several things came to my attention:
1.) Not many people realize that both of Ella’s eyes are prosthetics unless we mention it. (and why would they? Her eyes are quite realistic looking for being plastic shells!)
2.) Not many people know what a prosthetic eye even looks like. (again – why would they unless they know someone who has one?)
3.) Many people think that the placement of her prosthetics was a major surgical procedure. (I totally thought this same thing before I had Ella. It seems like a natural conclusion to me!)
I noticed on our calendar that we had an appointment with Ella’s Ocularist coming up, so I decided to document our visit with photos. I thought it might give those that were curious a better understanding into the world of Ocular Prosthetics. And just in case you were about to ask, the job description of our Ocularist, Greg Dootz, is:
“Design and fabrication of complete custom ocular prostheses, custom scleral shell prostheses, and socket expansion therapy for the treatment of microphthalmos and congenital anophthalmos.”
That last thing is the condition that Ella was born with – Bilateral Anophthalmia – or – the absence of both of your “globes”, or eyeballs.
Some of you might want to refer to this post I wrote years ago to explain more about why Ella was born this way. If you do read this old post you might notice that in the one comment below it, my good friend Allison (love HER!) reminded me that she believes in this old adage – “God will never give you more than you can handle.”
I will admit that I believed that once too. That is until I read an excerpt from Greg Lucas’s book “Wrestling With An Angel” – a story of love, disability and the lessons of grace. It can apply to anyone dealing with any sort of hardship in life.
Here it is:
“I hear religious minded people say all the time with good intentions. ‘God will never place a burden on you so heavy that you cannot possibly carry it.’
My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.
‘My power is made perfect in your weakness,’ He says, as we strain under our burden.
Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”
The truth of this passage just about smacked me upside the head. I am so totally in love with what he says here that I felt it was too important NOT to share It is TRUE for my life!!
OK – I digress. Back to our day at the Ocularist. Ella started seeing Greg when she was just three weeks old. (His office is at the Kellogg Eye Center on the campus of the University of Michigan in Ann Arbor. I am a life-long die-hard U of M fan. GO BLUE!) Greg started expanding Ella’s sockets with clear conformers first, and two days after her first birthday (6-25-07) she was fitted with a pair of gorgeous, hand-painted blue prosthetic eyes. (we even had him take a picture of my mom’s eyes and match the color to hers as best he could! Grandma still loves telling everyone that Ella has ‘her eyes!’)
They are nothing more than hard plastic shells that just fit right into her eye socket – no surgery necessary. Greg uses a rubber suction cup to pop them out and put them back in – and I use the same tools at home as I take them out monthly to clean both the eyes and the eye sockets. (I think back to my eighth grade self, staring at my first pair of contact lenses and shaking at the thought of even touching my own eye to put them in. I know just how far I have come!!) I do want to mention here that not all kids with BA choose to go the prosthetic eye route – and that is just fine – it is TOTALLY a case by case decision. Ella was born with excellent socket space and so we chose to have painted prosthetics made for her. Both for cosmetic reasons as well as facial structure growth reasons. While I know full well prosthetic eyes are not for everyone with BA, it was the best decision for Ella and for our family!
This post does include photos of Ella with one of her prosthetics out – as well as her eye just sitting out on the table. (Just wanted to give fair warning. While it will forever seem so natural to us, I realize some have never seen anything like this before. My goal is simply to share our life, to educate and to inform!)
I think I will let some of the photos do the talking for now…
This is Greg Dootz, our Ocularist. He is now a close family friend of ours and is also truly an Angel sent from Heaven. He is amazing. He is wonderful. When Ella was a baby, either Erik or I would have to hold her down while Greg worked on fitting her with conformers. She would scream (really loud) and turn red and it was hard for us to NOT feel like we were torturing our little baby. Greg would assure us, “We are not hurting her. Just think, there will come a day where you will come here and she will get up into this chair all by herself.” I had trouble believing it at the time, naturally, but rest assured that Ella loves Greg now and climbs right into his chair without help. She even tells him, “Ok – lets’ DO THIS!” Man, I love that little big girl so much I could bust!
Ella’s right eye is taken out to be cleaned in Greg’s prosthetic lab. (which I failed to get any photos of – but it is totally radical!)
This is Ella’s left prosthetic. (and the blue rubber suction cup used to take it out/put it in.) The flesh colored areas are just extra plastic that Greg has added over the years as Ella’s sockets have expanded with natural growth.
The left prosthetic from a different angle. Can you believe the detail Greg puts into hand painting his prosthetics? I mean, he even paints on the red blood vessels so the eyes appear as natural as possible. We consider him to be one of the most gifted Artists we know!
Greg looks into Ella’s empty eye socket to make sure she has no infection in her tissues. Her sockets were all clear on this visit!! Whoo-Hoo!!
Eyes in or eyes out – our Ella is and will always be the same sweet, spunky, sassy girl that we love!
Both sockets cleaned & eyes back into place. Chase has been dying to get up into that chair with her all day!!
To read more of Jill’s work please visit her blog at It is Well…with my Soul.