Butterflies

The symbolism of the butterfly is most commonly centered upon its unique transformation. In the beginning, its existence starts out as a crawling caterpillar. It then wraps itself in darkness during the dormant and captive chrysalis phase. And finally, when the transformation is complete, it emerges and is reborn into a beautiful, winged creature who can now spread its wings and fly. In my opinion, that is one of life's most impressive forms of evolution. The amazing metamorphosis of the butterfly is a powerful symbol of change and a reminder of the fragility of life.

"Because of the butterfly's short life span, many ancient peoples saw it as emblematic of the impermanent. It's physical beauty and its fluttering from flower to flower seeking nectar have made it synonymous with the more unstable and superficial aspects of the human soul."

• "Vision is a complicated process that requires numerous components of the human eye and brain to work together. The initial step of this fascinating and powerful sense is carried out in the retina of the eye. Specifically, the photoreceptor neurons (called photoreceptors) in the retina collect the light and send signals to a network of neurons that then generate electrical impulses that go to the brain. The brain then processes those impulses and gives information about what we are seeing. Light that reflects off of objects around us is imaged onto the retina by the lens. The retina, which consists of three layers of neurons (photoreceptor, bipolar and ganglion) is responsible for detecting the light from these images and then causing impulses to be sent to the brain along the optic nerve. The brain decodes these images into information that we know as vision."
  

- Excerpt taken from: "How We See: The First Steps of Human Vision"

When Emily was born, she was blind. Her brain had the ability to gain vision, but but the physical barrier of her clouded corneas prevented any light or images from being sent to the retina.

Like the evolution of a butterfly, Emily underwent her own unique transformation. She began her life just as the caterpillar does...crawling along, full of potential and the inner strength needed to realize that potential. She was living in a world of darkness for so long and endured countless surgeries, her time of captivity and change. Now, she has finally emerged with her eyes wide open, ready to see our world...her beautiful wings, ready to take her wherever she wants to go.

Just as the butterfly was once believed to be a symbol of impermanence, we are reminded everyday that the vision she has gained isn't permanent either. She has already had two transplants in both eyes, due to rejection and re-clouding of the corneas. And we are fighting to prevent the glaucoma from stealing her vision everyday. We will continue the struggle to maintain and improve her vision for the rest of her life. And all we have to hold on to is "Hope".

A couple weeks ago, I decided to forever mark the journey Emily has been through by getting a tattoo in her honor. Everyone gets tattoo's for different reasons, the loss of a loved one, the birth of a child, an emotionally difficult time in their life - or they just like the art. This tattoo is very personal and holds an unimaginable amount of emotion in it. The pain of actually getting the tattoo is so minimal compared to the physical pain Emily has been through and the emotional pain I have endured as her mother. But we are hoping the worst is behind us and from here on out we can smile and look on with amazement with how far Emily has come in her short and precious lifetime.

Fly...spread your wings Emily, and fly! Fly wherever the wind will take you, and know that wherever you land, Mommy and Daddy will always be by your side.

Revive Hope

I recently discovered an amazing blog that chronicles the lives of Organ/Tissue Donors and Recipients. Please check it out and help spread the word about how important it is to "Live Life and then Give Life"

http://revivehope.typepad.com/

My Mantra...

Cautiously Using The Word "Stable"

For almost 3 years we have been on this insane roller coaster, never knowing if we would ever get a chance to slow down and enjoy watching our daughter be a little girl. Would her childhood be dominated by long car rides, doctors waiting rooms and hospital visits? Or would she get a chance to just be a "normal" child. To be completely honest, in the days and weeks after her birth, I envisioned Emily as a blind child who struggled to live with her disability...Wow was I wrong!

Our little girl is now almost 3 years old and she can do just about anything any normal sighted child can do. She has some limitations, and hesitates when she isn't sure about something, but 95% of the time she is a normal child. She CAN kick a ball around in the yard, play in the sandbox, ride a scooter, jump into a swimming pool, chase seagulls on the beach, swing on a swing, play miniature golf, ride a carousel, color with crayons and chalk (and know the colors she is using) climb up and down steps without help, play with dolls, watch TV, look at books and name the pictures she sees, tell the difference between a panda bear and a brown bear...the list goes on and on. She can do ALL of those things!

She loves watching fish swim around in a fish tank, building with LEGO's and giving our kitty cat hugs. She knows the difference between orange and pink...blue and purple...red and yellow. EMILY CAN SEE! ! ! She is NOT blind anymore! The quality of her vision may not be "perfect" but neither is mine. I wear contacts, my husband does too - who knows...she may see better than either one of us does without glasses or contacts. She is simply amazing!

At our last appointments with all her doctors, they were all extremely happy with how she is doing. Her corneas are very clear (with the exception of the scarring in the center of her left eye). Dr. Zaidman reduced the Durezol (steroid drops) to 3 times a day in the Right eye and once a day in the left. (It had previously been 8 times per day in each eye at one point). She is still on 3 different Glaucoma meds, but her pressure has been within a good range consistently for the past few months and Dr. Kane is considering eliminating one of them. Dr. Morgan was so impressed with her vision at her visit a couple weeks ago. She is still farsighted, but her vision at a close range doesn't seem to be interfering with her daily life, so the need for glasses is questionable. They could help make her see things that are close less blurry, but it may not be significant at this point. We are holding off for a little while and will wait to see how things go over the next few months. No glasses and less eye drops! THAT is a wonderful thing!

Because of the decrease in meds and good range for her eye pressure, I've cautiously began to describe her as "Stable" when someone asks me how she is doing. Anything is possible, so I can't really subscribe to the idea that for the long term she is ok, but for the past few months and at this very moment...she is as stable as she can possibly be. That roller coaster has slowed down, our doctors visits have been decreased from once a week (right after the cornea transplants) to every 7-8 weeks. And when she goes back at the end of September, the appointments could be spread out even longer.

She is doing well, and I can't ask for more than that. Her eye drop schedule is just routine now...its not as consuming as it once was. Its just part of our daily life. She gets 7 different meds at various times of day, but there is flexibility now. I am not looking at the clock and saying "oh my god, I didn't give her drops at 9:47 like I needed to". Giving them at 10 or 11:00 is fine. Two years ago I never envisioned I would feel that way.

Living By Hope has worked for us so far...

When Do You Stop Looking Back?

In a previous post I mentioned that I had recently found a photo of Emily when she was born and all the pain and emotions came flooding back to me. It was hard to think back and almost relive those moments...although the chain of events that followed Emilys birth can't be changed, when is it ok to stop looking back on them with sadness? When will I be able to appreciate what we have been through and embrace how far Emily has come without feeling sad that she had to go through it in the first place? I sometimes find myself still feeling the envy of parents who welcomed a perfectly healthy baby into this world, wondering how different my life would be without Emily's disability weighing on my shoulders everyday. How do I stop looking at that beautiful baby in the supermarket who has the most clear and bright blue eyes and wishing that Emily looked like that? I don't want to go through life wishing it was different. I want to enjoy the life that God has given us and be thankful for the medical miracles that have given her the ability to see.

How do you let go of feelings that are so deeply rooted in your heart? When can you stop looking back on the events of your life and wish something were different? If those events had never happened, your life would not be what it is today...is that what you really want? Is that what I want? Do I wish that Emmy was born with perfectly healthy eyes? Of course I do, but she wasn't and I can't change that. Again....how do I stop looking at that baby in the store and feel the familiar pang of jealously? Why was my daughter born with this condition and that baby wasn't? Ask anyone who has ever been dealt a shitty hand in life and they will tell you the same thing...everyone wishes the shitty hand was dealt to someone else.

I am feeling kind of down and out lately. Nothing seems to make sense and when I think I've figured it all out, someone or something blatantly tells me I'm wrong. No one has life figured out, its a mystery to all of us. Just when I feel like things are going well or have reached that "stable" status...someone flips a coin and turns things upside down. Why is it that when you have a good thing going for you, it can't just continue to be good? Its never good for long enough, you're happy for a day or two, then BAM! Someone rips your heart out of your chest without any warning or explanation. Can we at least get an expiration date on our happiness so we can prepare for when its going to go sour? "Good things always come to an end" - I hate that phrase. It's so depressing. Who wants to live their life thinking that every good thing they've got going for them is at some point just going to fall apart? If that were the case the entire world should be on anti depressants.

Barely Holding On

There are good days and bad days....on the bad days I feel like I am just barely holding on...

"I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain
There is healing
In your name
I find meaning

So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you"

~Lifehouse

Possibilities

This post is totally off topic....sort of.

It seems cliche to use the phrase "when one door closes, another one opens", but its true. In the last year I have been inspired to do something I love and fill a void in my life that has been around for many years. Writing is a passion, something you need to live for in order to be successful at. My passion has been buried underneath diapers, sippy cups and endless loads of laundry for the last 7 years. I needed to uncover it, it was suffocating and needed to breathe the light of day again.

Opportunities only knock once, and if you don't open the door you'll never know what you might have missed. For years I've had aspirations and dreams about what I wanted to do but had no idea where to start. I needed a source of inspiration. I needed guidance and feedback from someone who knew and understood where I was coming from, both from a creative perspective and personal experience. Completely out of the blue, I was approached by someone who fit those credentials and suddenly an opportunity landed in my lap. A collaboration of thoughts, ideas, creativity and experiences was the spring board I needed to get the gears turning and my fingers typing. I was back in my element, finally after so many years of feeling like something was missing...I started to feel like I had a purpose again. Sadly, there were too many logistical and personal roadblocks that prevented that project from really getting off the ground. It's really unfortunate because something great could have come from that. The book was closed before we could even write the preface...That door was not only slammed shut, but locked up tight...

My spirit was broken and my enthusiasm had diminished.

Many months have gone by and very little has been written during that time. Lately I've had that nagging voice yelling at me, telling me I need to refocus, regroup and start writing again.

Cue knock from door #2...

Today, I met someone who shares my passion and can hopefully help get me back on track. There are possibilities on the horizon and I am once again standing on the edge of my future. I am re-committing myself to pursuing this and turning those dreams of mine into a reality. This time the only thing standing in my way is myself.

This door is wide open! Bring it on!

Two Surgeries in Two Weeks

My daughter is amazing. It is as simple and complex as that.

Back in February, Emily had a partial Tarsorrhaphy (see link below) and a repeat corneal transplant in her right eye, within 2 weeks of each other.
http://http//www.surgeryencyclopedia.com/St-Wr/Tarsorrhaphy.html

The surgery that I wanted to postpone (and did) ended up being something she really needed done in order to protect her cornea and allow the scratch to heal. Her eye was so dry, even with rewetting drops, and there really was no other option. If all the doctors agreed it was necessary, then I had to trust them. I was reassured that this, despite what Dr. Bortz told me, was NOT a permanent stitch. It can, and will, come out at some point in a few months. I didn't know what to expect when the procedure was over, and I was heartbroken to see my little girl look so different. My biggest concern was that now her eye condition was very noticeable and her, for lack of a better word - disfigured eyelid was going to draw attention to it. I didn't want her to look any different that she already did. Most people look at her and see there is something not quite right with her eyes, but when a facial disfigurement is prominent people STARE. I don't want her to go thru life being stared at, made fun of or pointed at. She has enough struggles ahead of her, why did she need to have this added to the list? When I saw her for the first time in the recovery room, my heart sank and I cried. I have tried to be so strong thru all of this and at that moment I was in a million pieces, I'm surprised the nurses didn't hear my heart shattering as it hit the floor.

The procedure allowed her cornea to begin healing within 48 hours, which was great...until we started noticing a grayish white area beginning to form in the center of her left eye...her GOOD eye. It was indeed what I suspected it was...a scar. Can you hear my heart cracking? Because once again it was about to be broken. WHY??? This was her good eye, the cornea that is/was doing fantastically, the one that she can see best with! Can't this poor little girl catch any kind of break? Give her a fighting chance for cryin out loud! A scar...gee I've heard that before. This is exactly what happened to her right eye back in Oct. of 2008 when she scratched that eye and scar tissue formed. That in fact is the reason she is getting another transplant in that eye. And now we have to same problem in her left. What the hell?????

NOTHING we can do about it, except hope it will fade over time.

The doctors don't think it's interfering with her field of vision, despite it being close to the center of her cornea. I hope not, she is seeing so well right now and she can't afford to start losing it. Deep Breath....Throwing my hands up in the air...what can I do? Just love her and have faith....keep hope alive.

On February 25th, in the middle of the biggest snow storm/blizzard NJ has seen in years...Emily successfully had her right cornea transplant surgery. We had to stay in a hotel by the hospital for 2 days because over 2 feet of snow fell in our area. It was an experience that's for sure. Just hours after the surgery, Emily was eating french fries and watching Mickey Mouse on our laptop in the hotel room, eye bandaged and all. This was surgery #17 for her... and when we took the bandage off the next day, Emilys whole world changed. THIS was the best she has EVER been able to see! Two healthy, clear corneas! (scarring excluded)

Much to the amazement of her doctors, therapists, friends and family alike, she is doing GREAT! We are now almost 2 months out from the surgery and her vision has definitely improved. She recently saw Dr. Morgan, her regular ophthalmologist, and she is still nearsighted, but it isn't enough to warrant glasses at this time. She is doing fantastic without them. In the words of Dr. Morgan "If I didn't see it, I wouldn't believe it. She is one of the best cases of transplant surgery I have ever seen, seriously I am amazed at how well she is seeing". Now THAT was music to my ears! You couldn't stop me from smiling that day!

She is still having some problems with differentiating between light and shaded areas outside, going from a sunny area to a shaded area she is not sure if there is a height difference. She steps big over the edge of the shadow as if she were stepping down off of a step. When she tries to navigate some areas in the yard, such as a bare spot in our yard, she asks for my hand to cross it. And when she goes down the steps in the front of the house, she can't really see the edge of the step because its the same color as the next one. She is cautious because she isn't sure how to interpret what she's seeing. Hopefully as she gets older and knows what these things are and learns how to navigate them, she won't hesitate as much. We just try to encourage her that she is ok and she can do it on her own. Most of the time we end up holding her hand, but she is still learning so that should change now that we'll be outside alot more. She didn't like the snow in the winter because I don't think she could see it well. All white snow to her didn't look like anything, she wouldn't even walk in it. We'd put her down and she'd freeze like a statue and just cry. Oh well, hopefully her new snow boots will fit next winter! : )

To all my blog readers who have been waiting for a new update, I apologize for not posting in a while. There has been so much going on in our lives that I haven't had much time to blog. I hope to post some new pictures of Emily from before and after these two surgeries and some of her just being....well...her! : )

She has been such an inspiration to so many people, most of all me. If I am having a bad day or am upset about something relatively insignificant, I look at her and her smile changes everything. She has overcome so much in her short 2.5 years and it makes my little problems seem so petty. She is my sunshine, my beautiful ray of light.

Mommy loves you baby cakes!

Reminders of How Far We've Come

The other day while cleaning out a box of old papers and junk mail, I came across a photo of Emily when she was just 2 days old. Her eyes were completely clouded over and untouched by the miracle of medicine and science. Her innocence overwhelmed me and all the painful emotions of those first few days came flooding back to me. I sat and cried for a long time.

Thinking back to how her journey and struggle began, reminded me of just how far she has come, how many hurdles she has conquered, how many tears I cried, how many times my heart ached for her.

And here we are now, 2 and 1/2 years later. She is seeing! And seeing WELL! She is doing so much more than I ever imagined she could at this age and I am just in awe of her strength and perseverance. She is my miracle. She is my inspiration. She is amazing!

A Huge Thank You!

A HUGE Thank you to Cheryl, Carlos and all the amazing women at Rumours Hair Salon! On February 28th, they hosted a Cut-a-thon, bakesale and raffle fundraiser for Emily. Everyone donated their time and talent (on their day off) to help Emily fight blindness. There are not enough words to express how thankful our family is for everything they have done for our daughter.

We love them all and their kindness has touched our lives forever!

Thank You to the Knights of Columbus in Kinnelon for hosting a breakfast fundraiser for Emily back in January. The outpouring of love we saw that day was overwhelming and we are so grateful for your care, concern and support you have given Emily!

God Bless You All!