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August 16, 2009
August 12, 2009
Report.
Anneleise is going to pre-K.
She seems happy, for now about it.
I am not happy about it, for now.
After the struggle and the yearning and the desire to have children and raise them, I now have to cash in two years of being a stay at home mom with her and ship her off to school.
Really the planets and the cosmos must be related to Karma, or something.
I feel very much like a failure, as well as we head into the three year anniversary of losing her twin sister Aubrey.
Mind you the plight of Aubrey's condition and complications through the pregnancy are a direct result of Anneleise's problems, no one, no mother can unless they are warped and pathetically a pity whore wants to be told that their child has a problem. When I read Aubrey's autopsy report it ripped my heart out, all I could do was cry that my child was that broken, that sick. My heart broke all over again, does often as I visit her at the cemetery. When Beka was cleared of blindness and palsy's...I was very stupid in thinking that day..."whew, I hope I never have to hear my child is as broken as Aubrey was or complications like thought with Beka..." wrong.
She is deemed not speech delayed, but communicative disorder. They said she would have this "label" even if she stuttered. The good thing is that Anneliese's cognitive scores were very high and well above where she needs to be, so were looking at coordination and speech issues which all stem from the almost nil amniotic fluid she was allowed due to Aubrey's need to save every drop she made for the weekly fluid removals. All in all , it could be much worse and I know this but...why does every thing I touch turn difficult.
I feel very Midas, but not precious metals more like sadness. Seems like there is just way , way too much sadness around me.
What ever, my child isn't like the rest, it is written on paper and although I could care a less and we are just fine, I have to subject her to harder work and lessons two year early to spare her the cruelty of "normal" kids and they're rejected parents.
Honestly, have you seen the movie The Village? Really I just want to live there. Can at 40 you become Amish?
It is our choice to take this opportunity, the spaces are limited so I have to do this. I do not want to do this, but I would rather miss out on the two years of our days together than spend countless nights holding her as she cries that the kids and even adults mock her and make fun of her.
When did rudeness become such an acceptable part of peoples make up.
There is no commitment to Apraxia as of yet, this is a very positive thing, I think we have at least the school year to avoid it.
So in the next two weeks.
My baby turns three, this week is the week that Brennah and Beka came home a year ago, Anneleise has a birthday party at our house Friday for the ones who won't attend children parties, Sunday her party at Jump it Up, then I have just 5 days with her before the flipping short bus picks her up on the 26th. All the while I relive the the 14th from the 28th trying to remember and make some memories of Aubrey because in my family mourning after the 28th will be considered "depressing, and annoying".
That was not nice. Ever since we had Aubrey I realized how often Tom and Ilaughed off very serious conditions, like calling each other retarded etc. We rarely if ever do this and it strikes a note with us because if Aubrey would have lived she would have most surely been delayed, truely in the fullest term of the word. So to even type that short bus remark was not only stupid but wrong, Iin no mean meanness from it, it is only out of hurt that I accept that my daughter will embark life with one struggle after another like her mother, after all it was the best I could do.
I hope that I at least spare her the health and fertility problems, however I have a plan of giving her these whopping hips at puberty this will surely stave off the guys.
The only thing that matters in the end is that I love my daughter no matter what, and she is a joy a gift and a pleasure everyday to wake to and care for and I will fight hard and protect her every minute of everyday that I can, tonight though, as her mother , I am sad for her, not as much for me, I just want what every mother wants for thier daughter. A gentle, lovley, life.
She seems happy, for now about it.
I am not happy about it, for now.
After the struggle and the yearning and the desire to have children and raise them, I now have to cash in two years of being a stay at home mom with her and ship her off to school.
Really the planets and the cosmos must be related to Karma, or something.
I feel very much like a failure, as well as we head into the three year anniversary of losing her twin sister Aubrey.
Mind you the plight of Aubrey's condition and complications through the pregnancy are a direct result of Anneleise's problems, no one, no mother can unless they are warped and pathetically a pity whore wants to be told that their child has a problem. When I read Aubrey's autopsy report it ripped my heart out, all I could do was cry that my child was that broken, that sick. My heart broke all over again, does often as I visit her at the cemetery. When Beka was cleared of blindness and palsy's...I was very stupid in thinking that day..."whew, I hope I never have to hear my child is as broken as Aubrey was or complications like thought with Beka..." wrong.
She is deemed not speech delayed, but communicative disorder. They said she would have this "label" even if she stuttered. The good thing is that Anneliese's cognitive scores were very high and well above where she needs to be, so were looking at coordination and speech issues which all stem from the almost nil amniotic fluid she was allowed due to Aubrey's need to save every drop she made for the weekly fluid removals. All in all , it could be much worse and I know this but...why does every thing I touch turn difficult.
I feel very Midas, but not precious metals more like sadness. Seems like there is just way , way too much sadness around me.
What ever, my child isn't like the rest, it is written on paper and although I could care a less and we are just fine, I have to subject her to harder work and lessons two year early to spare her the cruelty of "normal" kids and they're rejected parents.
Honestly, have you seen the movie The Village? Really I just want to live there. Can at 40 you become Amish?
It is our choice to take this opportunity, the spaces are limited so I have to do this. I do not want to do this, but I would rather miss out on the two years of our days together than spend countless nights holding her as she cries that the kids and even adults mock her and make fun of her.
When did rudeness become such an acceptable part of peoples make up.
There is no commitment to Apraxia as of yet, this is a very positive thing, I think we have at least the school year to avoid it.
So in the next two weeks.
My baby turns three, this week is the week that Brennah and Beka came home a year ago, Anneleise has a birthday party at our house Friday for the ones who won't attend children parties, Sunday her party at Jump it Up, then I have just 5 days with her before the flipping short bus picks her up on the 26th. All the while I relive the the 14th from the 28th trying to remember and make some memories of Aubrey because in my family mourning after the 28th will be considered "depressing, and annoying".
That was not nice. Ever since we had Aubrey I realized how often Tom and Ilaughed off very serious conditions, like calling each other retarded etc. We rarely if ever do this and it strikes a note with us because if Aubrey would have lived she would have most surely been delayed, truely in the fullest term of the word. So to even type that short bus remark was not only stupid but wrong, Iin no mean meanness from it, it is only out of hurt that I accept that my daughter will embark life with one struggle after another like her mother, after all it was the best I could do.
I hope that I at least spare her the health and fertility problems, however I have a plan of giving her these whopping hips at puberty this will surely stave off the guys.
The only thing that matters in the end is that I love my daughter no matter what, and she is a joy a gift and a pleasure everyday to wake to and care for and I will fight hard and protect her every minute of everyday that I can, tonight though, as her mother , I am sad for her, not as much for me, I just want what every mother wants for thier daughter. A gentle, lovley, life.
August 2, 2009
Hummm...
Too much going on to even sit long enough to write it out.
The babies birthday went great, very busy, the fall out is just calming down. Now we are getting ready for Anneleise's on the 14th.
Very emotional. My babies turned 1. The year went faster than Icould have even imagined. They are doing so well other than Beka's ENT thing and Atty's poor wobbly legs.
It is a very insane, difficult place for me to be in right now.
I have so, and I mean so much to be grateful, thankful and in awe of, however I feel as though this cloak of sadness enveloping me...it is all emotional and mental the product of too many almost disasters, nightmares coming true, but it is real and it is mine, so I must, I must resolve.
I don't have any pictures of the party. I will be getting some from a family friend and the aunts. I never left their sides and soaked it all up, I hope that everyone got some good pictures. We hope to get the three girls birthday pictures done this week, but there are many things going on here and we all know that chaos and three little people getting pictures done doesn't mix.
So, I'm here, don't know where that is but I'm still kicking.
I'm so very proud of my babies this year, they have sure had a year, tough one, not as calm and endearing as they deserved, but they are on a better road health and eating wise and I couldn't be prouder of them.
Anneleise will be getting her diagnosis this week, please pray that it is not Apraxia. That she will find a way to get her speech issues under control.
It just breaks my heart when people say they don't understand her...how can I continue to protect her while she is growing so fast.
And yeah if anyone is wondering, my table was empty at the girls birthday, there should have been another little girl here, Aubrey. I hope she is somewhere where she knows how much I miss her, and that I wish so very much that she could have stayed with us, I long very much today to have her here with us. We are a family of 6. She should be here.
I'm very angry at some things that I found the other night while I came across her autopsy packet. I don't know why I didn't notice it before, but I think I could have gotten her better care, and just maybe she would have been here. Who knows, only god and I doubt he will share anything until the day. You know my day.
So good night, off to Hopkins in the morning with Mom to get the second opinion. Tom is staying home with the three girls. Might want to pray for them, or him...depending if your one of those type who cheers for the underdog.
Did I mention that I really don't like this place where I am at? It is brutle, wish I could just sort it out and deal with small bites at a time.
The babies birthday went great, very busy, the fall out is just calming down. Now we are getting ready for Anneleise's on the 14th.
Very emotional. My babies turned 1. The year went faster than Icould have even imagined. They are doing so well other than Beka's ENT thing and Atty's poor wobbly legs.
It is a very insane, difficult place for me to be in right now.
I have so, and I mean so much to be grateful, thankful and in awe of, however I feel as though this cloak of sadness enveloping me...it is all emotional and mental the product of too many almost disasters, nightmares coming true, but it is real and it is mine, so I must, I must resolve.
I don't have any pictures of the party. I will be getting some from a family friend and the aunts. I never left their sides and soaked it all up, I hope that everyone got some good pictures. We hope to get the three girls birthday pictures done this week, but there are many things going on here and we all know that chaos and three little people getting pictures done doesn't mix.
So, I'm here, don't know where that is but I'm still kicking.
I'm so very proud of my babies this year, they have sure had a year, tough one, not as calm and endearing as they deserved, but they are on a better road health and eating wise and I couldn't be prouder of them.
Anneleise will be getting her diagnosis this week, please pray that it is not Apraxia. That she will find a way to get her speech issues under control.
It just breaks my heart when people say they don't understand her...how can I continue to protect her while she is growing so fast.
And yeah if anyone is wondering, my table was empty at the girls birthday, there should have been another little girl here, Aubrey. I hope she is somewhere where she knows how much I miss her, and that I wish so very much that she could have stayed with us, I long very much today to have her here with us. We are a family of 6. She should be here.
I'm very angry at some things that I found the other night while I came across her autopsy packet. I don't know why I didn't notice it before, but I think I could have gotten her better care, and just maybe she would have been here. Who knows, only god and I doubt he will share anything until the day. You know my day.
So good night, off to Hopkins in the morning with Mom to get the second opinion. Tom is staying home with the three girls. Might want to pray for them, or him...depending if your one of those type who cheers for the underdog.
Did I mention that I really don't like this place where I am at? It is brutle, wish I could just sort it out and deal with small bites at a time.
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