Monday, April 15, 2013

A Long, Hard Year

It feels like ages since I sat down and wrote about anything that has been happening with Emily.  My last post was in October when we first got her prosthetic shell...and I'm ashamed to admit that she still isn't wearing the shell.  I am terrified to put it in.  She is terrified to let me try.  Its something she needs, but forcing her will only hurt her, not help her.  I'm overwhelmed by the amount of emotional and physical stress involved in this process.  The Ocularist made it a point to say that I should not attempt putting her shell in by myself, so my husband and I need to do this together.  Its a process... Talking to her about it a lot should help, but getting her to actually allow us to do it is a completely different ball game.  While its not an imminent emergency that she be wearing it right now, she should have been wearing it months ago and TIME IS TICKING.  I need to refocus and regroup...but now we have a new issue thrown into the mix.  Cataract Surgery.

A month ago we saw Dr. Kane who alerted me to his suspicion that the cataract in her Right (only seeing) eye has grown and is not interfering with her vision.  Both doctors have been monitoring this for a while, but we had hoped it wouldn't progress.  Sadly it has.  Just a few days ago we saw Dr. Zaidman who also agreed that the cataract has gotten larger and more opaque, making it more difficult for her to see through it.  Her vision has gotten notably worse (in his opinion) since he saw her a few months ago.  Dr. Kane doesn't feel a lens implant would be beneficial at this time because the danger of a longer, more invasive surgery could lead to complications with not only her cornea graft, but also the area where he did the Glaucoma surgery a couple years ago.  After failed attempts at 2 Ahmed Valves and countless Glaucoma medications to regulate her eye pressure, he performed a Trabecalectomy, and created a new pathway for her eye fluid to drain from.  Her IOP has been stable ever since.  If an attempt is made to place a lens implant in her eye, the risk of damaging the pathway is too high.  If the pathway is compromised, trying to control her eye pressure again will be a major set back and possibly lead to further deterioration of what little vision she still has.  So...what does this mean???  It means that she will no longer be able to focus on anything without the aid of cataract glasses, which have very thick and strong corrective lenses.  She may not be able to see well enough without them to get around the house safely, so they need to be worn AT ALL TIMES. 

This will be a huge adjustment for her, and for us.  Right now she wears protective "cute" glasses with no corrective lenses.  But she doesn't like wearing them very often.  She takes them off before she even gets home from school and many times refuses to wear them at home.  The new glasses she will need all the time, so hopefully the necessity to see when wearing them will bring her to the realization that she can see with them and cant see without them. Remember...she's 5 1/2 - so rationalizing with her is not easy. 

Dr. Zaidman will be doing the surgery, but he doesn't feel its necessary to do it right away.  He has left it up to us to determine when the best time for us would be.  His OR schedule is booked solid through the end of May.  So he suggested either June or July, which isn't what I want.  I would rather her have the surgery now and get it over with.  It will give her time to heal and adjust to life with the new glasses before 1. school field day, 2. her dance recital at the very end of June, 3. Summer 4. Summer vacation at the shore towards the end of July.  As an adult we can rectify why our lives would need to be adjusted due to an unforeseen surgery/recovery and lifestyle change.  But for a 5 year old, all of those "normal" things are so important.  Missing out on something, or not being able to enjoy it the way you normally would, is devastating.  I don't know that with the glasses she will be able to dance the way she does now.  I don't know if she will be able to do gymnastics with the glasses on.  After the surgery she needs to heal AND adjust to a new way of seeing the world at the same time.  And to be completely honest...wanting my daughter to be happy, doing things she enjoys and being able to do them with the least amount of restriction is what matters to me the most.  The hell she has been through, and continues to go through, is not fair.  I don't want her to suffer or sacrifice anything more than she already has.  Why is God chipping away at her bright and colorful world????

I came across a photo of Emily this morning, taken ironically exactly 1 year ago to the day.  It was last Easter - April 15, 2012.  When I took that photo, I had no idea how powerful it would become.  It is one of the last photos taken of her before her world became darker.  That day could have been the very last day she could see with both eyes.  A week later we discovered that her retina had detached and she lost all vision in her left eye, for good.  I sat and stared at the photo earlier and cried, just as I am crying now...because she will never get back the innocence she has in that photo.  Her world will never be as bright, as carefree or as easy as it was that day.  But she is strong, stronger than I ever will be.  She is full of Hope and I pray that her Spirit is never broken.  Despite her disability, she is her own biggest cheerleader - showing us that she can do anything she puts her mind to and cheering us on to do it with her.  She will never know what our world looks like to us, but to her - its her normal and I have to learn to accept it just as she has...

April 15, 2012