I'll be the first one to admit that its been too many years since I've posted to this blog. I might be able to offer some excuses, ranging from "not enough time" to "if I don't talk about it, its not real". I wish I would have continued to write about everything that has happened since I last posted, but my excuses and reasons for not doing so are complicated. And that's a topic for another post all together.
In summary, alot has happened since I posted in 2015...a 3rd cornea transplant in Emily's right eye, lightning fast progression of the cataract in her right eye, Cataract surgery and the return of the evil's of Glaucoma. The last of which has brought me to right now, back to writing.
Since the trabecalectomy surgery many years ago, the glaucoma in her right eye had been controlled by the new drainage path and did not require any medication to keep it at a normal level. After she had cataract surgery in March of 2017, she has had to maintain a low eye pressure by using the Timolol eye drops again. It had been under control, usually ranging from 16-18 until we were at a routine follow up appointment with Dr. Zaidman in October of last year (2018). That day, her pressure was 24 and it raised some concerns, so we made an appointment with Dr. Kane to grasp a better understanding of what was going on. In Nov. of 2018, Dr. Kane said her pressure was about 16 and the cause of the elevated number in Oct. could have been due to her eye drops not being absorbed well enough that day. We made an appointment for 3-4 months later to check on the pressure, which brought us to last Wednesday.
Feb. 27, 2019 - Waking up at 5am to be at Dr. Kane's office promptly at 9 seemed daunting to me, but as I was listening to the 1010 wins traffic report I was glad to not be going into the city today. Some kind of major traffic was causing a 90 minute delay on the GWB and I was ever so grateful to be getting off Rt. 80/95 at the exit for Teaneck. Having the first appointment of the day, we were 30 minutes early so we stayed in the car until just before 9. The office door was locked and Dr. Kane arrived about 10 minutes after we did, unlocking the door to let us in. We still waited 15 minutes in the waiting room before he called us back. I was annoyed because its at least an hour drive home and I had to be at work by 11:00...time was ticking. I beat the doctor to the office and I still had to wait....ugh.
Once back in the room, I had hoped to hear some good news about her pressure and be on our way. But I've been down this road too many times and when something takes a heartbeat longer than usual, it means something is wrong. I wanted to throw up, my insides were turning inside out and tears pricked at the corner of my eyes. He hadn't even said a word yet, but I knew what was coming. He looked in her eye too many times, took longer than he ever has before to try and get her to look in one direction so he could look closely. He went back to his notes, searching for something I couldn't bring myself to ask about. He took her pressure 2 more times, just to be sure. And even after looking at her chart, flipping back to pages that must have dated back to countless appointments ago, he still didn't seem to find the answer he was hoping to find.
"I don't think the glaucoma is being managed right now"...he said, implying that her pressure was elevated. "How high is it?' I asked...."23/24" he replied. Ok I thought, we can adjust her medication, change it, add something...we've been here before and we can fix this. But then he added as he was still looking at her chart, "I'm noticing a change to her optic nerve". Me....silence. I was frozen. There weren't any words that I could find in that moment that would have been sufficient. My mind immediately went to a place that I had hoped we would never have to visit...is this the beginning of the end for her vision? Seconds ticked by, but it felt like I was silent for hours. Finally I asked "How much of a change do you see"? His answer was nothing short of a typical doctors response, you know, just enough information to let you know there is a problem, but not enough to tell you exactly how bad he thinks it is. "Enough of a change for it to catch my eye and notice a difference", he said, adding that he doesn't think it has affected her vision yet. There. There is the dark place, no pun intended, that I have been trying to avoid since the day Emily was born. In the 11+ years that I have been fighting for Emily's vision, I have learned that there are many, many things that can steal someones eyesight. And most of them can be treated and managed,with medication or surgery, in order to preserve or restore vision. The single most irreversible thing that will steal someone's eyesight, is damage to the optic nerve. We've navigated this far through multiple (6 total) cornea transplants, countless glaucoma surgeries including up to 3 valves in each eye, cataracts in both eyes, corneal ulcers and scratches, scar tissue removal and a detached retina that could not be repaired, leaving her with only vision in one eye. When she lost her sight in her left eye, it was a devastating loss. Her world changed, but she remained strong and her right eye compensated for the loss. The right eye has always been the stronger one, but has not been free of complications by any means. But this...optic nerve damage? WHY??? Why after all this time, after how hard she has fought to overcome all the odds against her to maintain functional vision, why is this happening???
My heart was breaking, but I had to remain calm and positive because I didn't want Emily to sense there was something more wrong than there was. It's a fine line that I have to walk when it comes to sharing with her the reality of what things mean. She understands so much now, but at the same time is still only 11, and 11 year olds don't need anxiety and stress like this. So I took a deep breath and put on my brave mom face, I may have perfected it by now. Dr. Kane changed her eye drops to Cosopt and said that he wanted to see her back "in the very near future" so he can take another look at her optic nerve and see whats going on. We made an appointment to come back in 2 weeks. I wiped tears away as I drove back up Rt. 80 towards home with the words "not affecting her vision yet" on repeat in my head.
Two days later, Emily's AMAZING Language Arts teacher returned from a medical leave and I filled her in on what was happening. The following Monday she reported to me that there was a change in the way Emily was able to see some flash cards with words and letters on it. She had not ever had a problem with them in the past, but that day she struggled. I immediately let her visual therapist know of the events from the doctors appointment and the new information from her teacher and she was going to do a Functional Vision Assessment when she saw her this morning.
This afternoon, I received a message from Terry stating that "compared to last years assessment, there was a definite decrease in both her near acuity and distance acuity". BOOM...the optic nerve damage IS affecting her vision. Devastation ran rampant through my heart and mind, I tried to keep up a brave front, but eventually the tears wouldn't stay hidden.
I will know more information once I speak with her tomorrow morning, but I can't help but go to that dark place in my mind...is this the beginning of the end? I sat in my car before leaving work and cried, letting out all the bravery I had tried to hold in. THIS ISN'T FAIR.
I'm scared for her. Scared for what this means for her future, for the rest of her life. If the glaucoma and subsequent optic nerve damage steals her vision, her world as she knows it will be gone forever.
Just as we asked the day she was born...WHY? Why is this happening?? Sadly, we will never have an answer.
Years ago I started making a visual bucket list, things I want her to see before its too late...now, time is ticking.
Wednesday, March 6, 2019
Sunday, August 23, 2015
Double Doctor Duty
November 24, 2014
Today we did double doctor duty, seeing both of Emily's NY eye doctors. First we went back to see Dr. Zaidman so he could check the scratch on Emily's cornea. Thankfully there was no infection, and the scratch has healed nicely on the surface, but will continue to heal for a few weeks. Some scar tissue has formed, which was to be expected (been there done this too many times). Her eye looks better than it did last week which is good news. Her cornea transplant is scheduled for January 22nd and barring any further complications, we only need to come back on January 2nd to do one last measurement for the cornea. We agreed that the cataract surgery will wait until after she has healed from the transplant, Dr. Z wants to get a better look at it while she is in surgery.
After we left Westchester we headed down into Manhattan to see Dr. Kane. IOP was good at 12-14 and he seems to think she will do well with the transplant. Fingers crossed for no complications with her eye pressure afterwards.
Today we did double doctor duty, seeing both of Emily's NY eye doctors. First we went back to see Dr. Zaidman so he could check the scratch on Emily's cornea. Thankfully there was no infection, and the scratch has healed nicely on the surface, but will continue to heal for a few weeks. Some scar tissue has formed, which was to be expected (been there done this too many times). Her eye looks better than it did last week which is good news. Her cornea transplant is scheduled for January 22nd and barring any further complications, we only need to come back on January 2nd to do one last measurement for the cornea. We agreed that the cataract surgery will wait until after she has healed from the transplant, Dr. Z wants to get a better look at it while she is in surgery.
After we left Westchester we headed down into Manhattan to see Dr. Kane. IOP was good at 12-14 and he seems to think she will do well with the transplant. Fingers crossed for no complications with her eye pressure afterwards.
Again?!?! Another Scratched Cornea?!?!
November 17, 2014
On Saturday, Nov. 15, I took a short car ride to Toys R Us with the kids to spend their birthday money. Emily fell asleep in the car and was only asleep for about 20 minutes. She was fine when we got in the car, but when she woke up her right eye was severely red and she was complaining of it hurting. Of course this happens on a Saturday and without going to the emergency room, we need to wait until Monday to have her seen. I totally freaked out thinking that it was the first sign of the terrible infection that she had a couple months ago in her left eye. I gave her extra antibiotic drops and hoped that by Sunday she would be ok. But no such luck.
Monday morning I called and got her in to see Dr. Zaidman right away. Of all things, she had a scratch on her cornea! Come on, can't this girl catch any breaks??? Dr. Z said it could have been from a bubble that we have seen come and go over the last few months that burst and caused a scratch. Or it could have been just a bad scratch. It was fairly large in size and had already caused her cornea to become cloudy...her vision was now less than it was 2 days ago. He took a culture to see if there was any infection and agreed to aggressively treat it with 2 different drops 8 times a day. It could take 3-4 weeks to heal and scar tissue may form where is heals, causing even further interference with her vision.
The saving grace to all of this? The timing. If this had happened 2 weeks later, it may not have healed in time for her transplant in January. No surgery on an eye that is still healing from infection or injury.
I don't know who is in charge upstairs...but whoever you are, please just leave my little girl alone. She has been through enough. Please stop putting her through so much pain!
ENOUGH IS ENOUGH!
On Saturday, Nov. 15, I took a short car ride to Toys R Us with the kids to spend their birthday money. Emily fell asleep in the car and was only asleep for about 20 minutes. She was fine when we got in the car, but when she woke up her right eye was severely red and she was complaining of it hurting. Of course this happens on a Saturday and without going to the emergency room, we need to wait until Monday to have her seen. I totally freaked out thinking that it was the first sign of the terrible infection that she had a couple months ago in her left eye. I gave her extra antibiotic drops and hoped that by Sunday she would be ok. But no such luck.
Monday morning I called and got her in to see Dr. Zaidman right away. Of all things, she had a scratch on her cornea! Come on, can't this girl catch any breaks??? Dr. Z said it could have been from a bubble that we have seen come and go over the last few months that burst and caused a scratch. Or it could have been just a bad scratch. It was fairly large in size and had already caused her cornea to become cloudy...her vision was now less than it was 2 days ago. He took a culture to see if there was any infection and agreed to aggressively treat it with 2 different drops 8 times a day. It could take 3-4 weeks to heal and scar tissue may form where is heals, causing even further interference with her vision.
The saving grace to all of this? The timing. If this had happened 2 weeks later, it may not have healed in time for her transplant in January. No surgery on an eye that is still healing from infection or injury.
I don't know who is in charge upstairs...but whoever you are, please just leave my little girl alone. She has been through enough. Please stop putting her through so much pain!
ENOUGH IS ENOUGH!
Emily's "Frozen" Birthday!
October 25, 2014
With the news of another transplant on the horizon and all the fear and uncertainty of Emily's future looming over me, I really needed a positive outlet to help me shift my focus onto the brighter days ahead. So I did what I do best...put together something extra special for her birthday. I really should have gone into the party planning business, I love it so much. All the small details really make such a big difference, even to an (almost) 7 year old.
Emily has been OBSESSED with the movie Frozen...so a Frozen birthday it would be!
First up was birthday pancakes and a special October "snowfall" in our dining room! Followed by a Frozen Ice Castle Cake and a Magical Transformation into Queen Elsa! Then a Frozen birthday party with friends at Westy's Gymnastics!
Happy Birthday sweet pea, I love you more than you know!
With the news of another transplant on the horizon and all the fear and uncertainty of Emily's future looming over me, I really needed a positive outlet to help me shift my focus onto the brighter days ahead. So I did what I do best...put together something extra special for her birthday. I really should have gone into the party planning business, I love it so much. All the small details really make such a big difference, even to an (almost) 7 year old.
Emily has been OBSESSED with the movie Frozen...so a Frozen birthday it would be!
First up was birthday pancakes and a special October "snowfall" in our dining room! Followed by a Frozen Ice Castle Cake and a Magical Transformation into Queen Elsa! Then a Frozen birthday party with friends at Westy's Gymnastics!
Today and everyday, we celebrate the pure joy and bright light that is our sweet Emily. She brings life into every room she walks into!
Happy Birthday sweet pea, I love you more than you know!
Cornea Graft Failure
October 10, 2014
I knew this day was coming, I felt it in the deepest part of my heart months ago, but that didn't soften the blow at all. Today was just verbal confirmation from the doctor. Emily's cornea had failed...she would need another transplant, the third one in this eye. Her doctor seemed hopeful, almost enthusiastic about her chances of better vision. But the risks for both failure of the graft and complications with her eye pressure and cataract were higher than the previous surgeries she had been through. Still, the risks did not outweigh the benefit. With her cornea badly damaged, beginning to cloud up and scar tissue blocking a portion of her vision, the reality of NOT doing another transplant meant her vision would continue to deteriorate. Surgery was necessary.
Dr. Zaidman ultimately left the time frame of the transplant up to us, we could do it as soon as January, or wait for a better time over the next 6-8 months. I hated the thought of putting her through this surgery again, but putting it off for a more convenient time in our lives seemed pointless. So we scheduled the surgery for January 22, 2015. It was after the holidays and would give her enough time to heal before spring and summer. She would need to be out of school for at least a week and no gym or sports for a month.
The other issue we needed to address was the cataract. Originally Dr. Zaidman wanted to remove it and replace it with a lens implant at the same time as the transplant surgery. But for some reason now he felt that it would be better to do the transplant first, wait for her to heal and then go back in to the the cataract surgery. I was concerned that this would possibly interfere with the health of the new cornea, but at the same time was leery about doing both surgeries at once. The complications that could be triggered were serious...I hated that she had a cataract in the first place.
I believe that all the surgery that her left eye endured was the reason her retina detached...too much for her eye to handle:
I knew this day was coming, I felt it in the deepest part of my heart months ago, but that didn't soften the blow at all. Today was just verbal confirmation from the doctor. Emily's cornea had failed...she would need another transplant, the third one in this eye. Her doctor seemed hopeful, almost enthusiastic about her chances of better vision. But the risks for both failure of the graft and complications with her eye pressure and cataract were higher than the previous surgeries she had been through. Still, the risks did not outweigh the benefit. With her cornea badly damaged, beginning to cloud up and scar tissue blocking a portion of her vision, the reality of NOT doing another transplant meant her vision would continue to deteriorate. Surgery was necessary.
Dr. Zaidman ultimately left the time frame of the transplant up to us, we could do it as soon as January, or wait for a better time over the next 6-8 months. I hated the thought of putting her through this surgery again, but putting it off for a more convenient time in our lives seemed pointless. So we scheduled the surgery for January 22, 2015. It was after the holidays and would give her enough time to heal before spring and summer. She would need to be out of school for at least a week and no gym or sports for a month.
The other issue we needed to address was the cataract. Originally Dr. Zaidman wanted to remove it and replace it with a lens implant at the same time as the transplant surgery. But for some reason now he felt that it would be better to do the transplant first, wait for her to heal and then go back in to the the cataract surgery. I was concerned that this would possibly interfere with the health of the new cornea, but at the same time was leery about doing both surgeries at once. The complications that could be triggered were serious...I hated that she had a cataract in the first place.
I believe that all the surgery that her left eye endured was the reason her retina detached...too much for her eye to handle:
- 2 cornea transplants, 2 Ahmed Valve implants, multiple surgeries to remove scar tissue from the valves drainage tube, removal of the cataract, lens implant and Vitrecotomy (removal of the jelly-like substance within the eye)
She has had slightly less complications with her right eye, but more surgery meant more chance of compromising the Trabecalectomy (new drainage path created for eye fluid to drain from), which meant we could be struggling to control her eye pressure again. And if cataract surgery was needed, disrupting the back of her eye could spell disaster and total blindness.
I had to believe that this next transplant would be a new, fresh start for her. It would be the best donor tissue yet. There were no other outcomes I would even let my mind consider. This might be Emily's last chance...
Thursday, August 20, 2015
"Now my eyes look the same"
October 1, 2014
Today we went back to the occularist to get Emily's new prosthetic lens, one that would be painted to match her good eye. I was nervous, mostly because I wanted her to simply allow me to put the lens in, and keep it in. But matching it as closely as possible to her right eye was extremely important. This lens would be the first of many that would help her gain self confidence, determine how others would accept and embrace her disability and most importantly, impact how she viewed herself. We all know she is beautiful, but children and adults alike often don't see their own beauty, they see their flaws instead. I grew up with having a very low self esteem. I was made fun of for the way I looked, my haircut, the clothes I wore...and various parts of my body that were either "too big" or "too small". I can pin point the exact moment in first grade when my nickname was given to me by some very mean girls on the playground. I know what I was wearing, where I was and who it was that said it. My life has not been the same ever since, and from that day forward I have had a body image problem. I didn't have a physical disability, I was a normal 6 or 7 year old kid. I'll admit, the name calling and teasing is what I fear most for Emily socially, so her new lens needs to look as natural as possible. It needs to blend seamlessly with her other eye in order for it to not make her good eye, look like the bad one.
We arrived at the office and I thought I heard a familiar voice, but wasn't sure. Then I saw through the open door to an exam room my friend Michelle and her son! We met through both Dr. Zaidman and Dr. Kane when their second son was born. Both of their boys have pediatric glaucoma, and the older boy had recently lost his vision in one eye. We have been talking on and off for years and although I knew they were going to bring their son to be fitted for a lens, I had no idea they would be there today! It was a wonderful surprise, not just for us as parents, but for the kids as well. Emily didn't remember him, but that didn't stop them from talking and playing like they had known each other for a long time.
While we waited for our appointment, and for the last minute details of Emily's lens to be finished, Michelle and I laughed and cried for at least an hour. We were there for support for each other, and for each others children, and it was nothing short of therapeutic for everyone. Our kids and respective families have been through so much, and no one can understand exactly how you feel like someone else who has been in your shoes. It was wonderful to be there to talk her through some of her fears, and have her help settle some of mine. They weren't supposed to be there, life through itself in the way of their original appointment, just like it had for us. It was no coincidence that they were there...it was the world working its magic for all of us who needed it. Right place, right time, right people.
I was no longer nervous about how the lens would look, I knew it would be amazing. But seeing it and helping to shape the outcome of either blurred lines around the iris, or a slightly bloodshot look to the whites of her eye, helped me realize it would be perfect. When it came time to put it in, Emily was hesitant...but she let me do it. She cried for a moment, and then opened her eyes and realized it was ok. She was ok. I cried...she was my Emily again...the most beautiful little girl in the world. I hugged her probably for more of my own comfort than hers, and after wiping away some tears, I asked her if she wanted to look in the mirror and see how she looked. And as she held the mirror up to her face she said "look mommy, now my eyes look the same again!"
In that bittersweet moment, there were no words to say other than, "yes Emily, they are!".
Today we went back to the occularist to get Emily's new prosthetic lens, one that would be painted to match her good eye. I was nervous, mostly because I wanted her to simply allow me to put the lens in, and keep it in. But matching it as closely as possible to her right eye was extremely important. This lens would be the first of many that would help her gain self confidence, determine how others would accept and embrace her disability and most importantly, impact how she viewed herself. We all know she is beautiful, but children and adults alike often don't see their own beauty, they see their flaws instead. I grew up with having a very low self esteem. I was made fun of for the way I looked, my haircut, the clothes I wore...and various parts of my body that were either "too big" or "too small". I can pin point the exact moment in first grade when my nickname was given to me by some very mean girls on the playground. I know what I was wearing, where I was and who it was that said it. My life has not been the same ever since, and from that day forward I have had a body image problem. I didn't have a physical disability, I was a normal 6 or 7 year old kid. I'll admit, the name calling and teasing is what I fear most for Emily socially, so her new lens needs to look as natural as possible. It needs to blend seamlessly with her other eye in order for it to not make her good eye, look like the bad one.
We arrived at the office and I thought I heard a familiar voice, but wasn't sure. Then I saw through the open door to an exam room my friend Michelle and her son! We met through both Dr. Zaidman and Dr. Kane when their second son was born. Both of their boys have pediatric glaucoma, and the older boy had recently lost his vision in one eye. We have been talking on and off for years and although I knew they were going to bring their son to be fitted for a lens, I had no idea they would be there today! It was a wonderful surprise, not just for us as parents, but for the kids as well. Emily didn't remember him, but that didn't stop them from talking and playing like they had known each other for a long time.
While we waited for our appointment, and for the last minute details of Emily's lens to be finished, Michelle and I laughed and cried for at least an hour. We were there for support for each other, and for each others children, and it was nothing short of therapeutic for everyone. Our kids and respective families have been through so much, and no one can understand exactly how you feel like someone else who has been in your shoes. It was wonderful to be there to talk her through some of her fears, and have her help settle some of mine. They weren't supposed to be there, life through itself in the way of their original appointment, just like it had for us. It was no coincidence that they were there...it was the world working its magic for all of us who needed it. Right place, right time, right people.
I was no longer nervous about how the lens would look, I knew it would be amazing. But seeing it and helping to shape the outcome of either blurred lines around the iris, or a slightly bloodshot look to the whites of her eye, helped me realize it would be perfect. When it came time to put it in, Emily was hesitant...but she let me do it. She cried for a moment, and then opened her eyes and realized it was ok. She was ok. I cried...she was my Emily again...the most beautiful little girl in the world. I hugged her probably for more of my own comfort than hers, and after wiping away some tears, I asked her if she wanted to look in the mirror and see how she looked. And as she held the mirror up to her face she said "look mommy, now my eyes look the same again!"
In that bittersweet moment, there were no words to say other than, "yes Emily, they are!".
Thursday, March 12, 2015
The First Time Emily Read To Me In Braille
September 30, 2014
Today, Emily came home with Braille homework. The night before I had watched her struggle to read some fairly simple words that had been enlarged for her. She was having such a hard time just seeing the words, reading them was even more difficult. She didn't like to read out loud in Braille at home. I'm not sure why, maybe she just didn't want to be bothered with it. So I suggested to her therapist that giving her homework might help. So when she came home with Braille homework a week or so later, she knew she had to do it. I can't quite articulate the emotions I experienced at the moment she began to read, but it was the first time she really read to us in Braille and I was in tears from the first word. The video really just speaks for itself, but if I had to choose three words to describe it they would be strength, pride and hope...
Braille may one day, possibly sooner than we think, become her main way of reading and writing.,,it's a reality we all now have to learn to accept. I am so proud of her!
Saturday, February 7, 2015
Viseobook - Emily's Coolest New "Tech Toy"
I visited Emily's school and got to see the new Viseobook that the NJ Commission for Visually Impaired was able to provide for her. Its Awesome! Its a portable desktop version of the CCTV that she had been using. I love it and wish she could have one for home!
Check it out here:
http://www.aph.org/visiobook/
Why School Picture Day Is So Stressful
For the normal average parent, school picture day probably isn't very stressful. The hardest part is deciding what outfit your child would wear, how their hair would be done and what backgroud to pick. But for me, taking any kind of photo of Emily has always been a source of heartbreak and anxiety. And school photos are the worst kind.
The stress of it all for me has deeply seeded roots that go all the way back to Emily's first Christmas in 2007. She was only about a month and a half old when we went for our traditional family Christmas photos. That year, the JCPenney studio we usually go to had hired new people to accommodate for the holiday busy season. Normally it wouldn't have been a big deal, but when you combine an inexperienced photographer with an emotional postpartum mom and a newborn who can't see, the results were bound to be disastrous. The raw emotion of our new baby's uncertain future always sat just beneath the surface of the "happy new mom" exterior that I tried to portray in public. Inside I was anything but happy. A myriad of emotions ran through my veins at any given moment, not knowing when they would rear their ugly head and boil to the surface, spewing out for all to see. That day, in that studio...it happened.
I don't remember what her name was, but she was "older"...not a fresh young girl who would welcome the idea of working with a new baby and 2 boys under the age of 5. She was in a hurry, we were a number to her and she was definitly NOT a "kid friendly" person. She had no idea how to get the boys to smile and I could feel my blood pressure rising as we came to doing shots of just Emily or the boys and Emily together. This precious little girl, all dressed up in her pretty dress, tiny shoes and matching beret hat could not see anything. She couldn't see the camera, she couldn't see the photographer and she couldn't see me. Her eyes wandered all over the place, most of the time they were not even both open at the same time. And even after explaining to the woman that she couldn't see, we just wanted a good photo of her looking "in the right direction"...they turned out terrible. The girl in the photo was not my daughter, she wasn't the little princess I dressed up earlier than day. She didn't look....normal. I stood there at the computer crying my eyes out while this insensitive woman kept trying to tell me they looked great, that she looked perfect. I remember being so heartbroken that I just kept crying and saying that I hated the pictures, all of them and that I didn't want to buy any of them. Thats when another photographer came over and started trying to calm me down. I explained how unhappy I was with not only the photos but with the photographer herself, that she was so insensitive to our familys needs. I took a deep breath and they reassured me that they would try again to see if someone else could get better photos.
After talking with Alyce, a sweet young girl named Rebecca came in and was very helpful in working with us in getting some better shots of Emily alone and with the boys. I didn't expect a miracle, but for a professional photography studio I did expect some level of understanding that not every family can just walk in, smile, pose and be done. Rebecca and Alyce went beyond their studio time limits for us, and in the end the photos came out much better than the first ones. I was so grateful for the time and effort they took to help make our family photos memorable, in a good way. To this day, I am very close with Alyce and keep in touch with Rebecca through facebook. Rebecca eventually moved on from the studio and now Alyce is the ONLY person I trust when it comes to taking Emily's professional photos, She knows how to talk to her, help her look in the right direction and is patient, knowing that she is working with a child who literally cannot control where she is looking. She has truly become part of our family!
Some people might think that a picture is just a picture, but to me its a moment in time that I cannot ever get back. Its a memory of what was happening in my life at that time, and years down the road it would become the only memory I will have of those moments. I refused to look back at Emily's first Christmas and feel even more heartbreak than necessary. It was a difficult time in our lives and I didn't want to look back and not recognize my own daughter, nor did I want her to look back at those photos, if she would be able to see them at all, and feel bad about herself.
How does all of this relate to school pictures? Well fast forward about 5 years to when Emily was in preschool. It was the year she lost vision in her left eye, and her eye began to shrink, cloud over and her eyelid no longer opened very wide. The school photographer obviously had no sense of how to capture her in a aesthetically pleasing way because she wasn't smiling, looking at the camera and her good eye was turned very far inward. Keep in mind that this was the BEST of the multiple shots they took of her that day. When I got the photos back, I actually broke down in tears, it was so hard to look at because the girl in that photo was NOT my daughter. It was the most visually disturbing image of her that I have ever seen. A few days later I drove to the studio office and asked for my money back. They said I could look at the other images and see if one was better, but none of them were acceptable at all. So they refunded me my money.
The next year, Kindergarten, I wrote her teacher an email asking if she could please accompany Emily to the photo area and help her know where to look and guide her in how and when to smile. I cried that morning, knowing that I wasn't there to help her. I had no control over how and when the camera shutter would click, how many shots would be taken and if she was smiling, eyes opened or closed or even looking in the right direction. Its something normal sighted parents take for grated. They send their kids to school and don't think twice about how their smile will be captured. For me its a stressful and depressing unknown. Its something I struggle with every time I try to take her photo myself...I want her to look her best, and I want her to look as "normal" as possible. I have to take dozens and dozens of photos to just be able to pick out the best one or two that look "ok". When we are with friends or in a group setting, my heart breaks because all those other moms are able to just say "smile" and they click once or twice and get a great photo of their child's beautiful eyes looking straight at them, often with a perfect smile to match. Emily doesn't fit into that mold, and I often lose the photo opportunity that everyone else gets because it takes so long to get her to understand where to look and smile.
While her Kindergarten picture came out ok, it wasn't great. But it wasn't terrible either. So this year, first grade, I once again recruited her teacher to try and help her out. This is how she looked before school that day. I posted it on facebook with the caption "school picture day for Emily, aka the most stressful day of September". A few people asked why it was so stressful, and I once again had to explain...
The stress of it all for me has deeply seeded roots that go all the way back to Emily's first Christmas in 2007. She was only about a month and a half old when we went for our traditional family Christmas photos. That year, the JCPenney studio we usually go to had hired new people to accommodate for the holiday busy season. Normally it wouldn't have been a big deal, but when you combine an inexperienced photographer with an emotional postpartum mom and a newborn who can't see, the results were bound to be disastrous. The raw emotion of our new baby's uncertain future always sat just beneath the surface of the "happy new mom" exterior that I tried to portray in public. Inside I was anything but happy. A myriad of emotions ran through my veins at any given moment, not knowing when they would rear their ugly head and boil to the surface, spewing out for all to see. That day, in that studio...it happened.
I don't remember what her name was, but she was "older"...not a fresh young girl who would welcome the idea of working with a new baby and 2 boys under the age of 5. She was in a hurry, we were a number to her and she was definitly NOT a "kid friendly" person. She had no idea how to get the boys to smile and I could feel my blood pressure rising as we came to doing shots of just Emily or the boys and Emily together. This precious little girl, all dressed up in her pretty dress, tiny shoes and matching beret hat could not see anything. She couldn't see the camera, she couldn't see the photographer and she couldn't see me. Her eyes wandered all over the place, most of the time they were not even both open at the same time. And even after explaining to the woman that she couldn't see, we just wanted a good photo of her looking "in the right direction"...they turned out terrible. The girl in the photo was not my daughter, she wasn't the little princess I dressed up earlier than day. She didn't look....normal. I stood there at the computer crying my eyes out while this insensitive woman kept trying to tell me they looked great, that she looked perfect. I remember being so heartbroken that I just kept crying and saying that I hated the pictures, all of them and that I didn't want to buy any of them. Thats when another photographer came over and started trying to calm me down. I explained how unhappy I was with not only the photos but with the photographer herself, that she was so insensitive to our familys needs. I took a deep breath and they reassured me that they would try again to see if someone else could get better photos.
After talking with Alyce, a sweet young girl named Rebecca came in and was very helpful in working with us in getting some better shots of Emily alone and with the boys. I didn't expect a miracle, but for a professional photography studio I did expect some level of understanding that not every family can just walk in, smile, pose and be done. Rebecca and Alyce went beyond their studio time limits for us, and in the end the photos came out much better than the first ones. I was so grateful for the time and effort they took to help make our family photos memorable, in a good way. To this day, I am very close with Alyce and keep in touch with Rebecca through facebook. Rebecca eventually moved on from the studio and now Alyce is the ONLY person I trust when it comes to taking Emily's professional photos, She knows how to talk to her, help her look in the right direction and is patient, knowing that she is working with a child who literally cannot control where she is looking. She has truly become part of our family!
Some people might think that a picture is just a picture, but to me its a moment in time that I cannot ever get back. Its a memory of what was happening in my life at that time, and years down the road it would become the only memory I will have of those moments. I refused to look back at Emily's first Christmas and feel even more heartbreak than necessary. It was a difficult time in our lives and I didn't want to look back and not recognize my own daughter, nor did I want her to look back at those photos, if she would be able to see them at all, and feel bad about herself.
How does all of this relate to school pictures? Well fast forward about 5 years to when Emily was in preschool. It was the year she lost vision in her left eye, and her eye began to shrink, cloud over and her eyelid no longer opened very wide. The school photographer obviously had no sense of how to capture her in a aesthetically pleasing way because she wasn't smiling, looking at the camera and her good eye was turned very far inward. Keep in mind that this was the BEST of the multiple shots they took of her that day. When I got the photos back, I actually broke down in tears, it was so hard to look at because the girl in that photo was NOT my daughter. It was the most visually disturbing image of her that I have ever seen. A few days later I drove to the studio office and asked for my money back. They said I could look at the other images and see if one was better, but none of them were acceptable at all. So they refunded me my money.
The next year, Kindergarten, I wrote her teacher an email asking if she could please accompany Emily to the photo area and help her know where to look and guide her in how and when to smile. I cried that morning, knowing that I wasn't there to help her. I had no control over how and when the camera shutter would click, how many shots would be taken and if she was smiling, eyes opened or closed or even looking in the right direction. Its something normal sighted parents take for grated. They send their kids to school and don't think twice about how their smile will be captured. For me its a stressful and depressing unknown. Its something I struggle with every time I try to take her photo myself...I want her to look her best, and I want her to look as "normal" as possible. I have to take dozens and dozens of photos to just be able to pick out the best one or two that look "ok". When we are with friends or in a group setting, my heart breaks because all those other moms are able to just say "smile" and they click once or twice and get a great photo of their child's beautiful eyes looking straight at them, often with a perfect smile to match. Emily doesn't fit into that mold, and I often lose the photo opportunity that everyone else gets because it takes so long to get her to understand where to look and smile.
While her Kindergarten picture came out ok, it wasn't great. But it wasn't terrible either. So this year, first grade, I once again recruited her teacher to try and help her out. This is how she looked before school that day. I posted it on facebook with the caption "school picture day for Emily, aka the most stressful day of September". A few people asked why it was so stressful, and I once again had to explain...
Hospital Follow Ups
Aug. 25-26, 2014
Emily did really well taking the oral antibiotics, steroids and eye drops. By the time we headed to see Dr. Lalin, the retina specialist that Dr. Morgan had suggested, most of the redness and swelling had gone away. Dr. Lalin's office was in Morristown near the hospital and we had never been there before. We waited a loooooong time. And as a new patient, they knew nothing about Emily. Not a surprise that when we finally got called into the room for the nurse to talk to us and do the preliminary exam, that we left just a minute later...she was blind in the eye we were there to examine. After what we had just been through the last thing I wanted to deal with were people who had no idea who Emily was or what her medical history entailed. The girl in the first exam room was short with me, so I was short with her in return. No she doesn't see any light, shadows or objects. She's blind in that eye and we are just here as a follow up to make sure there is no infection inside. We left the room and I went back out to the waiting area where we once again...waited. Over all before we were actually brought back into a real exam room we waited a hour and a half. Then we waited another 45 minutes before Dr. Lalin came in. We quickly reviewed her latest issue and then were escorted to yet another room, where we, yep you guessed it, waited. He came into the room, did a quick ultrasound of her eye and confirmed that there was no infection inside the eye. He also chimed in with a very condescending comment regarding her seeing eye saying "her cornea graft is failing, it should probably be replaced". Thanks, I didn't notice that before. I don't feel we needed to go see him at all...such a waste of my time and money.
The next day we went to see Dr. Kane, and he did a much more in depth exam of both eyes, as well as his own ultrasound. He agreed, no infection inside or behind the eye which was good news. Also good news was that her pressure was still good in the right eye, maintaining at around 12. However, he did feel that the cornea was starting to interfere with her vision, he couldn't really get a good look at the cataract or the retina because the cornea was so rough and hazy. He agreed...she needed another transplant.
The infection was gone, but cornea surgery was once again on the horizon. It wasn't a surprise, I knew it was coming...I just didn't know how soon it would be.
We were barely recovering from this crisis...I don't think I could tackle another one so soon.
Emily did really well taking the oral antibiotics, steroids and eye drops. By the time we headed to see Dr. Lalin, the retina specialist that Dr. Morgan had suggested, most of the redness and swelling had gone away. Dr. Lalin's office was in Morristown near the hospital and we had never been there before. We waited a loooooong time. And as a new patient, they knew nothing about Emily. Not a surprise that when we finally got called into the room for the nurse to talk to us and do the preliminary exam, that we left just a minute later...she was blind in the eye we were there to examine. After what we had just been through the last thing I wanted to deal with were people who had no idea who Emily was or what her medical history entailed. The girl in the first exam room was short with me, so I was short with her in return. No she doesn't see any light, shadows or objects. She's blind in that eye and we are just here as a follow up to make sure there is no infection inside. We left the room and I went back out to the waiting area where we once again...waited. Over all before we were actually brought back into a real exam room we waited a hour and a half. Then we waited another 45 minutes before Dr. Lalin came in. We quickly reviewed her latest issue and then were escorted to yet another room, where we, yep you guessed it, waited. He came into the room, did a quick ultrasound of her eye and confirmed that there was no infection inside the eye. He also chimed in with a very condescending comment regarding her seeing eye saying "her cornea graft is failing, it should probably be replaced". Thanks, I didn't notice that before. I don't feel we needed to go see him at all...such a waste of my time and money.
The next day we went to see Dr. Kane, and he did a much more in depth exam of both eyes, as well as his own ultrasound. He agreed, no infection inside or behind the eye which was good news. Also good news was that her pressure was still good in the right eye, maintaining at around 12. However, he did feel that the cornea was starting to interfere with her vision, he couldn't really get a good look at the cataract or the retina because the cornea was so rough and hazy. He agreed...she needed another transplant.
The infection was gone, but cornea surgery was once again on the horizon. It wasn't a surprise, I knew it was coming...I just didn't know how soon it would be.
We were barely recovering from this crisis...I don't think I could tackle another one so soon.
Subscribe to:
Posts (Atom)