May 23, 2011
Its been two and a half months since Emily's surgery to remove the calcium buildup on her left eye and it is still not completely healed. It took all of 3 days for the "bandaid" contact lens to pop out and that meant the risk of infection increased and new medicine needed to be used. At first we tried Tobrex, an antibiotic ointment, but within a week it didn't appear to help heal her eye much and she started showing signs of dry eye again, which is what caused the scar in the first place (after she scratched her eye in January of 2010). Here we are 16 months later and still dealing with the same scenario...frustrating does not even begin to explain it.
So Dr. Zaidman switched her off of the Tobrex and asked us to use an over the counter ointment called Lacri-Lube. It's made by Refresh and contains 40% more mineral oil than other dry eye ointments. Its the lubrication and moistness of her eye that allows it to heal so the additional mineral oil content makes all the difference.
Why can't this healing process just work faster for her??? It's breaking my heart.
Tuesday, May 24, 2011
Wednesday, March 2, 2011
Posting from the hospital...
I am attempting to write this post from the recovery room at the hospital. I think I have a WiFi connection.
Pillows of Hope has been a success!!! Today we brought 70 pillow pets to the Childrens hospital and the response was wonderful! 50 went upstairs to the kids who have been admitted and staying here while they fight their illnesses and recover from surgeries. The other 20 we brought with us into the surgical unit and passed a few of them out to kids who were having surgery today. Emily gave out the first one, a puppy, to a 4 week old little boy who was having hernia surgery. While he might not be old enough to fully appreciate what we were doing, his mom and dad were comforted buy our gift and our experience with Emily's previous surgeries. It was so nice to be able to help someone who had never experienced what we have come to feel is our normal...a day in the surgical wing with your child.
Emily went into surgery today at about 2:30, Jason went in with her to the OR. She is old enough now to understand what being here at the hospital means and when she was brought into the OR she covered her mouth...she knew the anesthesia mask was coming. "I don't want anything on my mouth" she said. I'm glad Jason was there, that would have broken my heart. This was Surgery #19 for our sweet little girl. She's a pro at this, but that doesn't mean its fun or not scary.
While she was in surgery we gave another pillow pet to a little boy and his face lit up like a christmas tree! His mom was in tears and I tried to comfort her telling her a little about Emily. This was her sons first surgery and she was scared. I'm not sure what he was here for, but I hope I was able to give him and his parents a little comfort and Hope that everything was going to be ok.
Emmy is now in recovery sleeping off the anesthesia, lying on daddy's lap. Dr. Zaidman said it was difficult but he was able to remove about 70% of the calcium scar. I haven't been able to see what her eye looks like yet,but she is wearing a "bandaid contact lens" while it heals. In other good news, her corneas look great and her eye pressure is normal! We are hoping for a complication free recovery which would mean the calcium doesn't come back and this procedure doesn't trigger any problems with her cornea.
Thank you to everyone who has kept Emily in their thoughts today and who have so generously helped us make Pillows of Hope a success!
More updates and pictures will be posted soon!
Pillows of Hope has been a success!!! Today we brought 70 pillow pets to the Childrens hospital and the response was wonderful! 50 went upstairs to the kids who have been admitted and staying here while they fight their illnesses and recover from surgeries. The other 20 we brought with us into the surgical unit and passed a few of them out to kids who were having surgery today. Emily gave out the first one, a puppy, to a 4 week old little boy who was having hernia surgery. While he might not be old enough to fully appreciate what we were doing, his mom and dad were comforted buy our gift and our experience with Emily's previous surgeries. It was so nice to be able to help someone who had never experienced what we have come to feel is our normal...a day in the surgical wing with your child.
Emily went into surgery today at about 2:30, Jason went in with her to the OR. She is old enough now to understand what being here at the hospital means and when she was brought into the OR she covered her mouth...she knew the anesthesia mask was coming. "I don't want anything on my mouth" she said. I'm glad Jason was there, that would have broken my heart. This was Surgery #19 for our sweet little girl. She's a pro at this, but that doesn't mean its fun or not scary.
While she was in surgery we gave another pillow pet to a little boy and his face lit up like a christmas tree! His mom was in tears and I tried to comfort her telling her a little about Emily. This was her sons first surgery and she was scared. I'm not sure what he was here for, but I hope I was able to give him and his parents a little comfort and Hope that everything was going to be ok.
Emmy is now in recovery sleeping off the anesthesia, lying on daddy's lap. Dr. Zaidman said it was difficult but he was able to remove about 70% of the calcium scar. I haven't been able to see what her eye looks like yet,but she is wearing a "bandaid contact lens" while it heals. In other good news, her corneas look great and her eye pressure is normal! We are hoping for a complication free recovery which would mean the calcium doesn't come back and this procedure doesn't trigger any problems with her cornea.
Thank you to everyone who has kept Emily in their thoughts today and who have so generously helped us make Pillows of Hope a success!
More updates and pictures will be posted soon!
Thursday, February 24, 2011
Update on Pillows of Hope
I am so overwhelmed by the response we've received about Pillows of Hope! I was brought to tears when I started receiving coupons, pillows and donations in the mail. I never thought I'd have such a great response! So far we have received more than 20 pillows (only 15 are in the picture below) and with the coupons I've gotten, we plan on buying a whole lot more!
Thank you to everyone who has been so kind and generous! The kids at the hospital are going to LOVE these! We have 1 WEEK LEFT before Emily's surgery, so I will be using all those great coupons to purchase as many as we can very soon! If you would like to donate a pillow, there is still time! And even if you can't get it to me before March 2nd, its ok. Emily will be going back to the hospital often, so we can always bring your pillow at another time. What's most important is that these adorable pillows bring a smile and hope to some very sick children. Please continue to help us!
Thank you again!
Sunday, February 6, 2011
Renewed Inspiration - Pillows of Hope
Often we get so wrapped up in our daily lives that it takes something simple yet profound to remind us of things that really matter in life. That is exactly what happened to me this morning.
Just last week, we were blessed by the kindness and generosity of The Knights of Columbus in Kinnelon, the town Jason and I grew up in. For the second time in a year they hosted a pancake breakfast fundraiser for Emily. It took us by surprise because we had no idea they were planning it until a week before hand when a sign was posted in front of the town hall with the information. The amount of love and support for Emily from friends, family and strangers alike has been extremely heartwarming and we are once again overwhelmed by it all.
For a very long time, I have been trying to find a way to "give back" and "pay it forward" but just haven't found something that would truly feel rewarding to us...until now.
While browsing through my facebook page this morning I stumbled upon a story that was posted by a friend in Indiana about a 7 year old boy with stage 4 Alveolar Rhabdomyosarcoma, a very aggressive cancer. He was diagnosed on Oct. 13th 2010. And at the beginning of his treatment, Jake faced 54 weeks of chemo, radiation and surgery. His prognosis is not good but he is a very strong, brave and selfless little boy. Inspired by the dinosaur pillow pet he was given as a gift, Jake is trying to collect 1,000 pillow pets for all of the sick children at his hospital. Why pillow pets? In the words of his mom "Because they don’t feel like playing games or doing the artwork all the time since the chemo makes them very sick. The doctors are telling the kids scary things every day, and there are lots of shots to endure.” Jake knows what sick children really need...a soft friend to help comfort them when they are scared and not feeling well.
You can read about Jake's journey below:
I cried when I read about his story and immediately I knew what I needed to do.
When Emily was just 5 weeks old, we brought her to the Maria Fareri Childrens Hospital for the first time. The building looked so comforting and we had a sense of peace as we walked from the parking lot, hoping that our answers and a good prognosis for Emily's eyesight were waiting for us inside. But as we approached the entrance, a young girl with a bandanna wrapped around her head was being wheeled out to her car in a wheelchair. She was weak and we watched as her father picked her up and put her in the car. She undoubtedly had cancer of some kind and at that moment my heart sank and tears welled up in my eyes.
Inspired by Jake's story and that sweet little girl in the wheelchair, we have decided to also start a collection of pillow pets to donate to the sick children at the Maria Fareri Childrens Hospital. Emily has endured countless surgeries at this hospital and is scheduled for another one on March 2nd. We are hoping that we can collect as many pillow pets as we can by then so that we can bring them with us that day. And she will be bringing along her own dolphin pillow pet she also received as a gift!
We know that Bed Bath and Beyond sell these adorable Pillow Pets and are hoping to collect as many of their 20% off coupons as we can from friends and family to use to purchase them with. If you have any coupons you would like to pass on to us we would appreciate it so much! Or if you would like to purchase a pillow pet to donate yourself that would be just as wonderful!
Bed Bath and Beyond Coupons or Pillow Pet donations can be sent to us at the following address:
Pillows of Hope
c/o Emily Bott13 Mott Drive
Vernon, NJ 07462
We are so excited about this and cannot wait to finally be able to pass on some of the kindness and happiness that has been given to us. Our goal is to make each child smile, give them some HOPE to hold on to and a little extra strength to fight against their illness.
Please help us pay it forward!
 |
| Emily, you are our inspiration of HOPE! |
Wednesday, September 29, 2010
Invisible Confetti
I cannot express the relief I feel at this moment...
Each time I sit in the waiting room at a doctors office (for hours on end)...my anxiety level gets higher and higher. Its like waiting for a train that is perpetually delayed. You know you have somewhere to go, something important to do, but you can't get there if the train never comes. My destination is always the same and over the past (almost) 3 years, I have rarely seen it on the horizon. In fact its never guaranteed to even be a scheduled stop along the route.
Where am I always looking to go??? The answer is simple, the town of "Good News" in the state of New York. Its a nice town just on the outskirts of the city of Cornea and Glaucoma.
It has been 7 weeks since Emily was seen last by Dr. Kane and Dr. Zaidman, and I was growing increasingly more nervous about her eye pressure and overall health of her eyes. It had never been longer than 4 weeks in between visits and I began obsessing even more about what her eyes looked like. If something didn't quite seem right, I started to panic. There has been some strange redness under her left eye, which may have always been there but now I am looking more closely at it. I've noticed that eye drifting upwards a little when she is trying to focus on something and sometimes it seems like she isn't able to control it and has to close her eye to bring it back to center. We have been so diligent about the eye drops and ointments, and we're doing everything we are supposed to do. But I always second guess if its enough.
Last week I sat with bated breath as Dr. Kane studied her eyes over and over again. She was such a big girl this time, insisting that she sit in the chair all by herself. She squirmed and wiggled, but overall she did good. It was the first time I'd really been able to see her being examined that way since I'm usually holding her on my lap. It was kind of awe inspiring to see her sitting there, after everything she's been through, helping her doctor hold the button on the light he uses to see into her eyes. After a rather lengthy exam, he announced that she looks really good! Her pressures are 14 (right) and 18 (left), which is without the Xalatan (Glaucoma meds) for 2 days. This meant he was taking her off of it completely! ONE LESS drop each day!!! It might not seem like much, but when she has been on so many different drops and we are now removing one from the list instead of adding one, its a HUGE deal. And a sign that the valve implant was still doing its job, and well.
He once again checked her for glasses but couldn't pin point her exact prescription, so we wait. If he's not pushing for them, then I trust that he doesn't feel its crucial for her to have them right now. There are a variety of reasons why he is having difficulty, including the corneas themselves and the lens implant. She was doing good and we left there with one less medication on the list and an appointment in TWO months! I have arrived at "Good News"....finally.
But this was only one half of my round trip ticket. The next stop was Dr. Zaidman's office a few days later. Here we go again....
While waiting for my connecting train to arrive, I wasn't as anxious because I had already had some positive news under my belt. I went in there with just a hint of a smile on my face, and maybe a little less weight on my shoulders. I knew he would be pleased with the pressure, it was just the matter of the health and clarity of the corneas that were the remaining issues. Once again, little miss Emmy wanted to be a big girl so she sat in the chair all by herself and willingly put her head in the big machine that allows her doctor to more precisely see the cornea and inner workings of her eyes. I was so proud of her! "Everything looks perfect!"
BING! For the moment the nagging and annoying voice of doubt and worry is quiet. It's still there, just not saying much. The remaining weight has been lifted off my shoulders and I feel like I can breathe a little better now. Its amazing what our minds can do to our bodies. We physically feel the effects of our own thoughts and emotions.
Dr. Z also is decreasing the Durezol (steroid drop) from 3 times a day in the Right eye, to 2 times a day...which is a good sign. Now we are at a total of TWO LESS Drops per day! Again, on the outside looking in you might think "so what".....When at one point in time Emmy was getting over 60 eye drops a day...each time you lessen it, its like winning the Super Bowl...invisible confetti floats down around me in the doctors office and there is a ticker tape parade for her on our way down the hospital corridor and out to the parking lot!
I left there with a smile in my heart and again an appointment in TWO months! 6 months ago Emmy needed to be seen twice a week. "I'm gonna miss you guys" Dr. Z said as we headed out of the exam room.
Back on the train headed home...very happy to have been to "Good News" twice in one week. I hope to visit there again at the end of November.
In the meantime, I hope the hospital staff doesn't mind cleaning up all the confetti...
Each time I sit in the waiting room at a doctors office (for hours on end)...my anxiety level gets higher and higher. Its like waiting for a train that is perpetually delayed. You know you have somewhere to go, something important to do, but you can't get there if the train never comes. My destination is always the same and over the past (almost) 3 years, I have rarely seen it on the horizon. In fact its never guaranteed to even be a scheduled stop along the route.
Where am I always looking to go??? The answer is simple, the town of "Good News" in the state of New York. Its a nice town just on the outskirts of the city of Cornea and Glaucoma.
It has been 7 weeks since Emily was seen last by Dr. Kane and Dr. Zaidman, and I was growing increasingly more nervous about her eye pressure and overall health of her eyes. It had never been longer than 4 weeks in between visits and I began obsessing even more about what her eyes looked like. If something didn't quite seem right, I started to panic. There has been some strange redness under her left eye, which may have always been there but now I am looking more closely at it. I've noticed that eye drifting upwards a little when she is trying to focus on something and sometimes it seems like she isn't able to control it and has to close her eye to bring it back to center. We have been so diligent about the eye drops and ointments, and we're doing everything we are supposed to do. But I always second guess if its enough.
Last week I sat with bated breath as Dr. Kane studied her eyes over and over again. She was such a big girl this time, insisting that she sit in the chair all by herself. She squirmed and wiggled, but overall she did good. It was the first time I'd really been able to see her being examined that way since I'm usually holding her on my lap. It was kind of awe inspiring to see her sitting there, after everything she's been through, helping her doctor hold the button on the light he uses to see into her eyes. After a rather lengthy exam, he announced that she looks really good! Her pressures are 14 (right) and 18 (left), which is without the Xalatan (Glaucoma meds) for 2 days. This meant he was taking her off of it completely! ONE LESS drop each day!!! It might not seem like much, but when she has been on so many different drops and we are now removing one from the list instead of adding one, its a HUGE deal. And a sign that the valve implant was still doing its job, and well.
He once again checked her for glasses but couldn't pin point her exact prescription, so we wait. If he's not pushing for them, then I trust that he doesn't feel its crucial for her to have them right now. There are a variety of reasons why he is having difficulty, including the corneas themselves and the lens implant. She was doing good and we left there with one less medication on the list and an appointment in TWO months! I have arrived at "Good News"....finally.
But this was only one half of my round trip ticket. The next stop was Dr. Zaidman's office a few days later. Here we go again....
While waiting for my connecting train to arrive, I wasn't as anxious because I had already had some positive news under my belt. I went in there with just a hint of a smile on my face, and maybe a little less weight on my shoulders. I knew he would be pleased with the pressure, it was just the matter of the health and clarity of the corneas that were the remaining issues. Once again, little miss Emmy wanted to be a big girl so she sat in the chair all by herself and willingly put her head in the big machine that allows her doctor to more precisely see the cornea and inner workings of her eyes. I was so proud of her! "Everything looks perfect!"
BING! For the moment the nagging and annoying voice of doubt and worry is quiet. It's still there, just not saying much. The remaining weight has been lifted off my shoulders and I feel like I can breathe a little better now. Its amazing what our minds can do to our bodies. We physically feel the effects of our own thoughts and emotions.
Dr. Z also is decreasing the Durezol (steroid drop) from 3 times a day in the Right eye, to 2 times a day...which is a good sign. Now we are at a total of TWO LESS Drops per day! Again, on the outside looking in you might think "so what".....When at one point in time Emmy was getting over 60 eye drops a day...each time you lessen it, its like winning the Super Bowl...invisible confetti floats down around me in the doctors office and there is a ticker tape parade for her on our way down the hospital corridor and out to the parking lot!
I left there with a smile in my heart and again an appointment in TWO months! 6 months ago Emmy needed to be seen twice a week. "I'm gonna miss you guys" Dr. Z said as we headed out of the exam room.
Back on the train headed home...very happy to have been to "Good News" twice in one week. I hope to visit there again at the end of November.
In the meantime, I hope the hospital staff doesn't mind cleaning up all the confetti...
Sunday, September 19, 2010
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.
Tuesday, August 31, 2010
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/
http://revivehope.typepad.com/
Monday, August 30, 2010
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...
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...
Tuesday, April 27, 2010
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.
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.
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