I am really tired, so not sure how informative this is going to turn out.
Dr. P called. I do so love that woman. She had spoken to both the other doctors and begged them to come to some sort of agreement on how to proceed. I take partial blame for this, I didn't follow up with Dr. V (the surgeon) because I thought things were going okay.
He wants to push the study up to Thursday. By the time I heard that, the lab was closed. I am calling in the morning to see if they can work something out. If she gets in on Thursday, I am to schedule an appointment with Dr. V on Friday. He feels another surgery is certain.
There was more, but right now I am emotionally drained. I literally lost it with Dr. P. She is such an amazing woman and knows everything (the crazy daughter) that is going on in my life right now and has been so supportive. I think I cried for ten minutes while she just kept telling me it was going to be okay.
I am not a crybaby damnit. I can handle anything...so why am I crying now?
Tuesday, September 7, 2010
Sunday, September 5, 2010
Choices
People are always talking about choices. Are you pro choice or pro life? Do you like chocolate or vanilla? I wonder what about those things we don't get to choose.
To be totally honest, I would have never chosen for Emily to have Down syndrome. It wasn't like I was pregnant and anticipating her birth and thought to myself "Wouldn't it be great if she had some major disability that would cause people to look at her strange and create life long health issues?" I mean, who does that?
Now admittedly, Emily has got to be the cutest child in the entire world, so when people look at her, I just tell myself they are amazed at the sheer beauty that she radiates, but there are days it just gets to you.
Tonight I had to sit down and pretty much violate my precious daughter. She has a serious bowel issue and requires at minimum a weekly enema. I would rather hang myself than have to put my daughter through such torture, but it is either this or blockages that require surgery. Watching her cry as we go through the procedure breaks my heart. I spent the hour after just telling her how sorry that I am.
If I had the choice, I would make this bowel issue go away. If I had the choice I would have chosen that she not need open heart surgery at 8 months old. If I had the choice, we would only see doctors once a year or so instead of once every few months. If I had the choice, I would keep my heart from stopping every single time she has an unexplained fever. You see, children with Down syndrome are at a much higher risk of Leukemia and unexplained fevers could mean low blood counts which could mean the "C" word. I really hate the "C" word.
If I had the choice I wouldn't insist that they draw blood at least twice a year just to get a count on what is her "normal".
However, I didn't get the choice. Instead I was chosen. Looking at things in that manner I realize that there is one thing I would not change if given the choice. I would not change the fact that Emily has Down syndrome. Yes, life has been a bit more scary at times, but what an amazing ride.
Never was it so triumphant when one of my children walked. I mean, Emily had been working on it for two years and the smile on that beautiful girl's face when she made it to the couch from the table was one of the most beautiful sights I have ever seen. She was so proud of herself.
Never did it seem so mind blowing to watch my child eat with utensils. Never did the sound of a beating heart bring me to tears quite like when I heard Emily's following her heart surgery.
You see, I might not have been given the choice about Emily and Down syndrome, but even if I had been; I wouldn't have changed a thing.
Sometimes lack of choices brings the greatest reward.
To be totally honest, I would have never chosen for Emily to have Down syndrome. It wasn't like I was pregnant and anticipating her birth and thought to myself "Wouldn't it be great if she had some major disability that would cause people to look at her strange and create life long health issues?" I mean, who does that?
Now admittedly, Emily has got to be the cutest child in the entire world, so when people look at her, I just tell myself they are amazed at the sheer beauty that she radiates, but there are days it just gets to you.
Tonight I had to sit down and pretty much violate my precious daughter. She has a serious bowel issue and requires at minimum a weekly enema. I would rather hang myself than have to put my daughter through such torture, but it is either this or blockages that require surgery. Watching her cry as we go through the procedure breaks my heart. I spent the hour after just telling her how sorry that I am.
If I had the choice, I would make this bowel issue go away. If I had the choice I would have chosen that she not need open heart surgery at 8 months old. If I had the choice, we would only see doctors once a year or so instead of once every few months. If I had the choice, I would keep my heart from stopping every single time she has an unexplained fever. You see, children with Down syndrome are at a much higher risk of Leukemia and unexplained fevers could mean low blood counts which could mean the "C" word. I really hate the "C" word.
If I had the choice I wouldn't insist that they draw blood at least twice a year just to get a count on what is her "normal".
However, I didn't get the choice. Instead I was chosen. Looking at things in that manner I realize that there is one thing I would not change if given the choice. I would not change the fact that Emily has Down syndrome. Yes, life has been a bit more scary at times, but what an amazing ride.
Never was it so triumphant when one of my children walked. I mean, Emily had been working on it for two years and the smile on that beautiful girl's face when she made it to the couch from the table was one of the most beautiful sights I have ever seen. She was so proud of herself.
Never did it seem so mind blowing to watch my child eat with utensils. Never did the sound of a beating heart bring me to tears quite like when I heard Emily's following her heart surgery.
You see, I might not have been given the choice about Emily and Down syndrome, but even if I had been; I wouldn't have changed a thing.
Sometimes lack of choices brings the greatest reward.
Saturday, September 4, 2010
Head meet wall
I promised myself that this blog would not turn into "that kind of blog", but it seems here I am right where I didn't want to be.
The crazy ex wife called today. After the ridiculous time we had trying to get the children home from her last visitation, Hubby said "No more visits". Great because after that drama, I seriously packed a bag and came as close as I have ever come to leaving for good.
Well, as he is speaking to her today I keep hearing him say "maybe, maybe...I said maybe." I am a curious soul and since this involves me in at least some small (huge) way, I rightly asked him what the conversation was about.
He says that she is wanting to pick them up next weekend. My first response; "Are you fucking kidding me? Please tell me you just said maybe to get her off the phone." Now, for those new to this whole thing (no one, but I can dream), we have had the children for nine years. She literally dropped them at our door with a trash bag of clothes each and then disappeared for almost a year.
Since she has come back into their lives more frequently (every three or four months) she has done her best to manipulate the children. The weekend in question was a nightmare. She didn't want to bring the children home, so she made up some elaborate story that left Hubby yelling at me and me packing up to take our two children somewhere far, far away.
To even give her the slightest idea she would be allowed to take them for another weekend simply astounds me. It has taken two weeks just to get the youngest child to interact with us again.
Hubby got angry at my "questioning HIS decisions" when in reality, I am the one that will face the hell upon their return. I am not up for another round and I am totally sick and tired of not being allowed to speak my opinion on matters that have dire consequences on my life.
He was in the midst of cooking dinner. The kids are hungry. What did he do? Went to the bedroom and took a nap. It took youngest child going in there to find out the status of dinner. I should mention that he slept until 10 this morning, so it was absolute bullshit for him to be lying down.
He informs her he is no longer cooking. Fine, I head off to finish up and he yells at me to leave the kitchen. No problem, asshole.
I hear Florida is beautiful this time of year.
The crazy ex wife called today. After the ridiculous time we had trying to get the children home from her last visitation, Hubby said "No more visits". Great because after that drama, I seriously packed a bag and came as close as I have ever come to leaving for good.
Well, as he is speaking to her today I keep hearing him say "maybe, maybe...I said maybe." I am a curious soul and since this involves me in at least some small (huge) way, I rightly asked him what the conversation was about.
He says that she is wanting to pick them up next weekend. My first response; "Are you fucking kidding me? Please tell me you just said maybe to get her off the phone." Now, for those new to this whole thing (no one, but I can dream), we have had the children for nine years. She literally dropped them at our door with a trash bag of clothes each and then disappeared for almost a year.
Since she has come back into their lives more frequently (every three or four months) she has done her best to manipulate the children. The weekend in question was a nightmare. She didn't want to bring the children home, so she made up some elaborate story that left Hubby yelling at me and me packing up to take our two children somewhere far, far away.
To even give her the slightest idea she would be allowed to take them for another weekend simply astounds me. It has taken two weeks just to get the youngest child to interact with us again.
Hubby got angry at my "questioning HIS decisions" when in reality, I am the one that will face the hell upon their return. I am not up for another round and I am totally sick and tired of not being allowed to speak my opinion on matters that have dire consequences on my life.
He was in the midst of cooking dinner. The kids are hungry. What did he do? Went to the bedroom and took a nap. It took youngest child going in there to find out the status of dinner. I should mention that he slept until 10 this morning, so it was absolute bullshit for him to be lying down.
He informs her he is no longer cooking. Fine, I head off to finish up and he yells at me to leave the kitchen. No problem, asshole.
I hear Florida is beautiful this time of year.
Friday, September 3, 2010
When crazy moves in
My oldest daughter went to visit her father a month ago. She left here a typical teenage girl. She had a smart attitude at times, but she was overall a good kid. We were very close and I knew I would miss her for the month she was away.
Notice I used the past tense? Two weeks after arriving there my sweet little girl turned into Sybil. She had unprotected sex with some boy she had just met and apparently became pregnant. Ironically, she stopped taking her birth control pills because she didn't want to get fat. Well, how did that work out for ya, missy?
Since that time she has changed personalities more often than she normally changes clothes. One day I am her best friend and she misses me terribly. Other days I am the devil and she hates my guts. I just ask that she pick a personality and stick with it. My prozac isn't up for this.
Last night was the final straw. She has deleted me from her Facebook at least twice in the past three weeks. I had stopped even attempting to talk with her since I don't speak crazy. After my youngest son's orientation last night I begin getting these crazy text messages.
According to "Sybil" I have been texting her ex boyfriend. Now let me make a few things clear; I have a very sick three year old that is getting ready to undergo some major tests. I have a five year old that is starting all day Kindergarten on Tuesday and three other children gearing up for school. I also have a rather demanding husband. I do not have time to text some 15 year old boy, nor do I have the desire. I only speak to my own 15 y/o because the law says I must.
She called me a dumb bitch and demanded that I stay out of her life. Reality check little one; you are my responsibility and oh yes, YOU contacted me. Where is her father in all of this? Apparently somewhere with his head stuck so far up his ass that the doctors are unsure they can remove it.
Listen up little one, I love you more than life itself, but here is a newsflash for you; my world does NOT revolve around you. You have siblings that require my care and attention as well. Go sell crazy some place else, we are all stocked up here.
Notice I used the past tense? Two weeks after arriving there my sweet little girl turned into Sybil. She had unprotected sex with some boy she had just met and apparently became pregnant. Ironically, she stopped taking her birth control pills because she didn't want to get fat. Well, how did that work out for ya, missy?
Since that time she has changed personalities more often than she normally changes clothes. One day I am her best friend and she misses me terribly. Other days I am the devil and she hates my guts. I just ask that she pick a personality and stick with it. My prozac isn't up for this.
Last night was the final straw. She has deleted me from her Facebook at least twice in the past three weeks. I had stopped even attempting to talk with her since I don't speak crazy. After my youngest son's orientation last night I begin getting these crazy text messages.
According to "Sybil" I have been texting her ex boyfriend. Now let me make a few things clear; I have a very sick three year old that is getting ready to undergo some major tests. I have a five year old that is starting all day Kindergarten on Tuesday and three other children gearing up for school. I also have a rather demanding husband. I do not have time to text some 15 year old boy, nor do I have the desire. I only speak to my own 15 y/o because the law says I must.
She called me a dumb bitch and demanded that I stay out of her life. Reality check little one; you are my responsibility and oh yes, YOU contacted me. Where is her father in all of this? Apparently somewhere with his head stuck so far up his ass that the doctors are unsure they can remove it.
Listen up little one, I love you more than life itself, but here is a newsflash for you; my world does NOT revolve around you. You have siblings that require my care and attention as well. Go sell crazy some place else, we are all stocked up here.
Thursday, September 2, 2010
Story of my life
I have just recently (today) come back to this blog. I originally created it so that I could move some post over from another site in case that site shut down. Once that threat became moot, I pretty much abandoned this blog.
Today, a dear friend decided to come over to the darkside (we do have cookies after all) and created a blog over here. I figured this was as good a time as any to bring my site back from the dead and start anew.
Imagine my horror when I realized that a word in the title of my blog was misspelled. Now, for those of you that don't know me, I am a spelling snob. I really feel that people respond to you differently if you are not well spoken and unable to spell. Blame the fact that I grew up in the South. People automatically deducted 50 IQ points the moment they heard my accent. I had to prove to them that I was indeed an intelligent person.
So, for those of you that had a nice chuckle at my mistake and quickly ran from the woman that couldn't spell "humorous" correctly, please stop back in. I did not proofread my information when creating the title and am now horrified that this mistake went undetected for a year.
Today, a dear friend decided to come over to the darkside (we do have cookies after all) and created a blog over here. I figured this was as good a time as any to bring my site back from the dead and start anew.
Imagine my horror when I realized that a word in the title of my blog was misspelled. Now, for those of you that don't know me, I am a spelling snob. I really feel that people respond to you differently if you are not well spoken and unable to spell. Blame the fact that I grew up in the South. People automatically deducted 50 IQ points the moment they heard my accent. I had to prove to them that I was indeed an intelligent person.
So, for those of you that had a nice chuckle at my mistake and quickly ran from the woman that couldn't spell "humorous" correctly, please stop back in. I did not proofread my information when creating the title and am now horrified that this mistake went undetected for a year.
Thanks, April
Never one to be left out and not wanting to lose my blog friend...I am back to blogger. I haven't had overwhelming success here, but maybe it is time for something new so that I can express myself without fear of others (crazy exes for instance) finding out information that is none of their business.
My life is in shambles at this precise moment. Maybe coming here to begin again is just the ticket to remind me of why I began writing in the first place.
I can't promise you brilliance with even one of my blogs, but I can promise you I am often funny and more often slightly crazy. Who knows, you might just like what you read.
My life is in shambles at this precise moment. Maybe coming here to begin again is just the ticket to remind me of why I began writing in the first place.
I can't promise you brilliance with even one of my blogs, but I can promise you I am often funny and more often slightly crazy. Who knows, you might just like what you read.
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