So we were driving down the road and Cade was watching TV with his headphones on. We had been driving in silence (thank God for headphones) for awhile and all the sudden he says "Mom, Aly won't have to wear an eye patch anymore." I of course asked why. He says "In Christian Ed at my school, my principal Mrs Pickles said there is a story in the Bible where Jesus healed a man that was blind. So, all we have to do is pray and tell Jesus that we are ready for Aly to be healed and then she won't have to wear the patch." I of course started crying. I wish it really was that simple, child-like faith is what we should all have. He is so sensitive and worried about his sister. The fact that he was just watching TV and then that came into his mind shows that he's got alot on his mind too.
Did I mention how much I'm going to miss Christian Ed next year when he goes to kindergarten?
Tuesday, June 8, 2010
Friday, June 4, 2010
Aly Update
My thoughts are still jumbled about what we found out today. On one hand it's the same as we already knew from last weeks eye visit but with a few new developments. The 3 hour ride home helped me clear up a few things but I don't think I've fully resolved it in my mind yet. The new developments are that her eyes are worse than we thought. The first doctor let her cover her eye with her own hand, apparently she was peeking so her vision was bad but not what it really is. Her vision in her bad eye today was 20/300 which is a step beyond legally blind. Her good eye is holding steady though, so we'll just keep watch on it and hopefully it will stay stable for awhile.
So, this is the deal. She's having surgery at Riley on July 6th. The cataract in her left eye IS her lens so she will get an implant lens. They guess at the strength since she's so young and he vision isn't fully developed. As the doctor explained to us today, the surgery is the easy part. The rehabing of her eye is the hard part. Hopefully after the surgery her vision will be "better" (but still not near good) in her bad eye so in order to strengthen it her good eye will have to be patched so she is forced to use the bad eye. This sounds harmless for the most part but she will have to wear a patch 4-6 hours a day-everyday-until she is 8 years old. That's everyday, for 5 years. Plus glasses for the rest of her life. If you think like me, you might be wondering "If she's blind in the left eye and they patch her right eye, will she be running into things?" This is the exact question I asked today. The answer was "Yes she will". Great, that's reassuring. The doctor explained it's like a baby learning to walk, bumping into things and falling down but once her eye strengthens over time she will get better at it. I guess that's supposed to be comforting. Scotty asked how common congenital cataracts are in a 3yr old. The answer was "General population-extremely rare, at Riley-not as rare." I feel two things about that statement. 1) of course it's extremely rare, this is Aly we're talking about. 2) at least we're in good hands and they are used to dealing with this sort of thing.
This may not seem like a big deal, and compared to some of the issues we deal with it's not AS big. After all, lots of kids get glasses at young ages and lots of kids are supposed to wear eye patches, this is of course true. But really after all Aly has gone through, will go through and deals with everyday-another surgery and daily patching of her eye plus losing the ability to see once the patch is on, is just frustrating. That being said, I reiterate my feelings from my last post. I am not in control and I take comfort in that.
To put things in perspective, we were in the gift shop (buying Aly the toy we promised) and a boy about 10 or 11 came up next to us. He had obvious physically deformities and he had a shaved spot on his head with a monitor screwed into his scalp. He bent down next to Aly and asked her what her name was. She told him and then asked him what his name was. He said "my name is Gus, can you say Gus?" she said "Hi Gus" and he smiled at her. He has everything stacked against him but yet he was so sweet to a little girl that just happened to be standing next to him. I really think God makes up for a person's shortcomings (for lack of a better word) with other attributes. All you had to do was look at that boy and know he had a great personality and has probably a better outlook on life than most people. I think that about Aly too. She's been through so much and yet she is such a sweet little girl. She captures the heart of everyone she comes in contact with. It doesn't hurt that she is tiny with blonde curls!
So in the spirit of accepting the things I cannot change, I am determined to change the things I can. So I am starting with what my family puts into their bodies. I admit that I am a "stress eater" and I cling to that excuse when I find myself eating unnecessary things. I will leave a doctors appt and drive through McDs b/c that is something I can control. So, if I DO have control over that then I have the control to NOT do that. This is not the start of a diet or weight loss plan, this is the start of me regaining control over SOMETHING in my life. Oh, and if you see me with a sweet tea-get over it- I CHOOSE sweet tea!!! :-)
I will end with a funny kid story. As I'm writing this blog, Scotty is rebuilding Cade's bike. Cade of course is all up in his business, asking questions, touching things, dropping things, etc. I tell him to take his sister and go play in his room. He stomps off with Aly following behind and says "Nobody likes us". Aly says "but we like each other, you love me and I love you". Scotty decides to go in there and break up their pity party. He walks in the bedroom and says "Hey, I like you both and I love you both", Aly says "Ok, but you're still selfish!" That would be a comment she learned from her brother! At least they form a united front!!
So, this is the deal. She's having surgery at Riley on July 6th. The cataract in her left eye IS her lens so she will get an implant lens. They guess at the strength since she's so young and he vision isn't fully developed. As the doctor explained to us today, the surgery is the easy part. The rehabing of her eye is the hard part. Hopefully after the surgery her vision will be "better" (but still not near good) in her bad eye so in order to strengthen it her good eye will have to be patched so she is forced to use the bad eye. This sounds harmless for the most part but she will have to wear a patch 4-6 hours a day-everyday-until she is 8 years old. That's everyday, for 5 years. Plus glasses for the rest of her life. If you think like me, you might be wondering "If she's blind in the left eye and they patch her right eye, will she be running into things?" This is the exact question I asked today. The answer was "Yes she will". Great, that's reassuring. The doctor explained it's like a baby learning to walk, bumping into things and falling down but once her eye strengthens over time she will get better at it. I guess that's supposed to be comforting. Scotty asked how common congenital cataracts are in a 3yr old. The answer was "General population-extremely rare, at Riley-not as rare." I feel two things about that statement. 1) of course it's extremely rare, this is Aly we're talking about. 2) at least we're in good hands and they are used to dealing with this sort of thing.
This may not seem like a big deal, and compared to some of the issues we deal with it's not AS big. After all, lots of kids get glasses at young ages and lots of kids are supposed to wear eye patches, this is of course true. But really after all Aly has gone through, will go through and deals with everyday-another surgery and daily patching of her eye plus losing the ability to see once the patch is on, is just frustrating. That being said, I reiterate my feelings from my last post. I am not in control and I take comfort in that.
To put things in perspective, we were in the gift shop (buying Aly the toy we promised) and a boy about 10 or 11 came up next to us. He had obvious physically deformities and he had a shaved spot on his head with a monitor screwed into his scalp. He bent down next to Aly and asked her what her name was. She told him and then asked him what his name was. He said "my name is Gus, can you say Gus?" she said "Hi Gus" and he smiled at her. He has everything stacked against him but yet he was so sweet to a little girl that just happened to be standing next to him. I really think God makes up for a person's shortcomings (for lack of a better word) with other attributes. All you had to do was look at that boy and know he had a great personality and has probably a better outlook on life than most people. I think that about Aly too. She's been through so much and yet she is such a sweet little girl. She captures the heart of everyone she comes in contact with. It doesn't hurt that she is tiny with blonde curls!
So in the spirit of accepting the things I cannot change, I am determined to change the things I can. So I am starting with what my family puts into their bodies. I admit that I am a "stress eater" and I cling to that excuse when I find myself eating unnecessary things. I will leave a doctors appt and drive through McDs b/c that is something I can control. So, if I DO have control over that then I have the control to NOT do that. This is not the start of a diet or weight loss plan, this is the start of me regaining control over SOMETHING in my life. Oh, and if you see me with a sweet tea-get over it- I CHOOSE sweet tea!!! :-)
I will end with a funny kid story. As I'm writing this blog, Scotty is rebuilding Cade's bike. Cade of course is all up in his business, asking questions, touching things, dropping things, etc. I tell him to take his sister and go play in his room. He stomps off with Aly following behind and says "Nobody likes us". Aly says "but we like each other, you love me and I love you". Scotty decides to go in there and break up their pity party. He walks in the bedroom and says "Hey, I like you both and I love you both", Aly says "Ok, but you're still selfish!" That would be a comment she learned from her brother! At least they form a united front!!
Tuesday, June 1, 2010
Why Not?
As I'm sure most people do when not so great things happen, I find myself asking "Why Me?" or more importantly "Why Aly?". Why does it seem like we can't catch a break, why does SHE have to be sick, why does MY child have to deal with the things she does? It's always sad when I hear about some one's child having some incurable illness but that's someone ELSE'S child, not mine. That stuff happens to OTHER people. As I was in the shower praying (where I do my best praying, I might add, probably b/c it's the only place where I get peace and quiet) I found myself praying for Aly's appt this Friday. Naturally, my thoughts drift to "dang it, I'm tired of all this crap". Then I realize, you know what, Why NOT me? Why NOT Aly? When God gave her to me there was no disclaimer attached to her that said she would be healthy. I seem to think that b/c I've already had to deal with losing both my parents that I shouldn't have to deal with anything else. Like God is going to say "Okay Melissa, you've had your allotted heartbreaks and struggles now I'm going to move onto someone else". Saying it that way though makes it sound like I think God made her sick. I don't believe that but I do believe God made her the way she is. People ask me if I'm afraid to fly b/c my mom was killed in a plane crash. My standard answer is "No, I'm safe in a plane b/c God won't allow that to happen to my family twice". Who am I to say that?! What I'm meaning to say is that I am not an exception to the rule and neither is Aly. The ways of the world are not fair and bad things happen. People get sick, people are in accidents, people die. There's also a reason for everything right? or is that just a line the "church" feeds us to make us feel better about our hardships? What does make me feel better is knowing that I'm not the one holding the cards. What I do or don't do, think or don't think changes nothing. The song "Healer" comes to my mind. "You hold my world in Your hands". It's so so true. The God of all the galaxies, the Creator of everything we see and don't see, the One who gave the entire earth breath and life has MY world in His hands. Knowing that makes me get through everyday and sleep every night.
PS. If you're tired of hearing about Aly stuff, I'm sorry. It's what's on the forefront of my mind these days. I have to have strong feelings to be able to write and that seems to be what is stirring my feelings these days. Maybe one day soon I'll get back to telling stories about Spiderman shooting people with webs in Target! I will tell one little funny Cade story though. He was riding in the passenger seat of Scotty's truck the other day and he propped his elbow up sideways on the door (window rolled down). Picture how someone rides with their elbow out of the window. He said "Hey, Dad Look". He raised his eyebrows, grinned a cheesy grin, pointed to his arm and said "I'm just like a parent!".
PS. If you're tired of hearing about Aly stuff, I'm sorry. It's what's on the forefront of my mind these days. I have to have strong feelings to be able to write and that seems to be what is stirring my feelings these days. Maybe one day soon I'll get back to telling stories about Spiderman shooting people with webs in Target! I will tell one little funny Cade story though. He was riding in the passenger seat of Scotty's truck the other day and he propped his elbow up sideways on the door (window rolled down). Picture how someone rides with their elbow out of the window. He said "Hey, Dad Look". He raised his eyebrows, grinned a cheesy grin, pointed to his arm and said "I'm just like a parent!".
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