I know that it's been a while since I last posted something.
But I really wish the new moms had something more. Something they could hold or have better support.
That can be the best thing to ease a mothers worries. To know her family, her support system is there for her. I wish that everyone who has read my blog would write a note or send me a message. I would be more then happy to talk to anyone to discuss what is happening and not to give up.
I wish more families took the initiative to learn about TTTS. If they could ease the stress a little bit, I could help.
Tuesday, November 23, 2010
Monday, November 8, 2010
deciding on what treatment.
I have been asked this a lot over the past 2 years. "How did you choose the treatment option?".
Well, is a combination of what you the mom or dad feel is right for your family and how your TTTS has developed.
Such as the laser treatment would have save both of my sons had it not been for the anterior placenta. And due to that had we chosen to terminate one son, the other more then likely would have survived. But, we did not have this information durring the pregnancy.
We can rest knowing that we gave both sons a fighting chance.
We knew we couldn't have lived with our selves if we went through with the selection and then to find out we would have had both, had we done nothing.
You basically have to search you own heart to decide. Also know, that no one can judge you. Parents, siblings, clergy, strangers, they will but shouldn't.
Well, is a combination of what you the mom or dad feel is right for your family and how your TTTS has developed.
Such as the laser treatment would have save both of my sons had it not been for the anterior placenta. And due to that had we chosen to terminate one son, the other more then likely would have survived. But, we did not have this information durring the pregnancy.
We can rest knowing that we gave both sons a fighting chance.
We knew we couldn't have lived with our selves if we went through with the selection and then to find out we would have had both, had we done nothing.
You basically have to search you own heart to decide. Also know, that no one can judge you. Parents, siblings, clergy, strangers, they will but shouldn't.
Thursday, October 7, 2010
poetry
I WAS ONCE YOU
By: Colleen Fledderman
Newtown Square, PA
Bereaved Mother
I have never met Carlie Brucia’s mother, Nicole Brown Simpson’s mother, Polly Klass’s
mother, Princess Dianna’s mother, Carolyn Bessette Kennedy’s mother or Laci
Peterson’s mother. But I know them all intimately. I know what dwells in their hearts
and souls everyday. Like them I buried my daughter.
What am I now? Am I a daughterless mother? That sounds like an oxymoron, two
words that contradict themselves. My eighteen year old daughter, Amy Marie, died on
May 25, 2001. My life is forever changed. Burying a daughter is a surreal experience.
There are no words in Webster’s Dictionary that can explain the grief, the heartache, the
pain, the depression or the anguish. Heartbroken is too small a word. The words don’t
exist because it is not supposed to happen. There are no plausible definitions that could
accurately describe “bereaved parent.” Groups of words can’t be strung together on a
typed page to accurately explain the grief. It is impossible to bury your child, yet it
happened.
Logically, the factual part of my brain processed the information. The emotional part of
my brain argues with the fact everyday. Each and every morning it is still a shock to my
entire being! I still peek into her bedroom and expect to find her perfectly made bed a
mess of jumbled covers with my daughter snuggled deep inside of them. Parents don’t
bury children! Headstones read “loving mother,” “cherished wife.” They don’t read
“beloved daughter.” That is not the natural order of the universe. This was not supposed
to happen to me. It always happens to other people. I see reports on the evening news,
articles in the newspaper describing horrible events that resulted in the death of
someone’s child. It isn’t supposed to be my child. How can this be? It can’t be changed.
I can’t say, “Amy, want to go to the mall?” “Let’s go out to lunch.” She can’t tell me
about her “freaking bio test” that she has to study for all night long.
Things I want to say to her are forever left unspoken. How will I go on? I can’t go on,
yet I do. My body wakes up each day. I don’t ask for this to happen, it just does. My
lungs take in air, it is automatic, something that I have no control over. My physical
body now controls the course of events in my life. I breath, I eat, I walk, I talk, I put one
foot in front of the other. I load the washer and shop for food. I can work. I can teach. I
can think on the job about the job. My spiritual being merely exists. It cannot flourish or
soar ever again.
When my daughter died, my emotional self was buried with her. When she died, I also
buried her future husband to be, my future grandchildren, my daughter’s future wedding,
my daughter’s college graduation ceremony, my holiday, my joy. I buried my best
friend. I buried the once perfect life that I knew and lived everyday. Tucked into the
corner of Amy’s casket is my happy husband. My despondent bereaved husband now
lives with me. I buried my fifteen year old daughter’s future matron of honor. I buried
Renee’s future nieces and nephews. There is not enough room in Amy’s casket for all
the things that died with her. Dreams, hopes, joys, lives, emotions, hearts and souls
slipped into that casket with Amy. They occupy every square inch of that place. One
day my fifteen year old daughter will be older than her older sister. Can my brain every
understand that? Renee will have a nineteenth birthday. Amy did not. How can the
impossible happen?
Bereaved parents go on. We go on because we have no other road to travel. It is just we
are not “normal” anymore. We used to be you. We used to be the PTO moms and the
Girl Scout leaders. We brought lovely frilly fancy holiday dresses for our daughters. We
were once carpool moms and soccer moms. We sat at musical recitals and listened to the
first melodious squeaks and squawks of their instruments. Forgotten homework
assignments were rushed to school for our children. In our heads we planned our
beautiful daughter’s future wedding. Vision of the bridal gown and the reception danced
in our heads. We couldn’t wait to have grandchildren and baby-sit and enjoy. We wanted
to tell our daughters that their children were just like them. Our daughter’s christening
gown is carefully preserved and awaiting to be worn by her own children. We wanted to
hold our grandchildren’s chubby little fingers in our hands and remember holding our
daughters chubby little fingers in our hand.
We used to answer the telephone and hear, “Hey mom, what’s up?” Now the phone
doesn’t ring. And it will never ring again with that sweet voice we so desperately would
love to hear. Now we are set apart. We are not normal anymore. People choose to walk
down a different aisle to ignore us. It is too painful for them to think about our lives.
They might take a moment to wonder how we go on. They say, “I can only imagine your
pain.” That is not true. No one can imagine it unless they live it. We now belong to a
new group. We never wanted to be a part of this group, bereaved parents. No one lines
up for this membership. We wish our membership would never grow. I am glad you are
not me.
By: Colleen Fledderman
Newtown Square, PA
Bereaved Mother
I have never met Carlie Brucia’s mother, Nicole Brown Simpson’s mother, Polly Klass’s
mother, Princess Dianna’s mother, Carolyn Bessette Kennedy’s mother or Laci
Peterson’s mother. But I know them all intimately. I know what dwells in their hearts
and souls everyday. Like them I buried my daughter.
What am I now? Am I a daughterless mother? That sounds like an oxymoron, two
words that contradict themselves. My eighteen year old daughter, Amy Marie, died on
May 25, 2001. My life is forever changed. Burying a daughter is a surreal experience.
There are no words in Webster’s Dictionary that can explain the grief, the heartache, the
pain, the depression or the anguish. Heartbroken is too small a word. The words don’t
exist because it is not supposed to happen. There are no plausible definitions that could
accurately describe “bereaved parent.” Groups of words can’t be strung together on a
typed page to accurately explain the grief. It is impossible to bury your child, yet it
happened.
Logically, the factual part of my brain processed the information. The emotional part of
my brain argues with the fact everyday. Each and every morning it is still a shock to my
entire being! I still peek into her bedroom and expect to find her perfectly made bed a
mess of jumbled covers with my daughter snuggled deep inside of them. Parents don’t
bury children! Headstones read “loving mother,” “cherished wife.” They don’t read
“beloved daughter.” That is not the natural order of the universe. This was not supposed
to happen to me. It always happens to other people. I see reports on the evening news,
articles in the newspaper describing horrible events that resulted in the death of
someone’s child. It isn’t supposed to be my child. How can this be? It can’t be changed.
I can’t say, “Amy, want to go to the mall?” “Let’s go out to lunch.” She can’t tell me
about her “freaking bio test” that she has to study for all night long.
Things I want to say to her are forever left unspoken. How will I go on? I can’t go on,
yet I do. My body wakes up each day. I don’t ask for this to happen, it just does. My
lungs take in air, it is automatic, something that I have no control over. My physical
body now controls the course of events in my life. I breath, I eat, I walk, I talk, I put one
foot in front of the other. I load the washer and shop for food. I can work. I can teach. I
can think on the job about the job. My spiritual being merely exists. It cannot flourish or
soar ever again.
When my daughter died, my emotional self was buried with her. When she died, I also
buried her future husband to be, my future grandchildren, my daughter’s future wedding,
my daughter’s college graduation ceremony, my holiday, my joy. I buried my best
friend. I buried the once perfect life that I knew and lived everyday. Tucked into the
corner of Amy’s casket is my happy husband. My despondent bereaved husband now
lives with me. I buried my fifteen year old daughter’s future matron of honor. I buried
Renee’s future nieces and nephews. There is not enough room in Amy’s casket for all
the things that died with her. Dreams, hopes, joys, lives, emotions, hearts and souls
slipped into that casket with Amy. They occupy every square inch of that place. One
day my fifteen year old daughter will be older than her older sister. Can my brain every
understand that? Renee will have a nineteenth birthday. Amy did not. How can the
impossible happen?
Bereaved parents go on. We go on because we have no other road to travel. It is just we
are not “normal” anymore. We used to be you. We used to be the PTO moms and the
Girl Scout leaders. We brought lovely frilly fancy holiday dresses for our daughters. We
were once carpool moms and soccer moms. We sat at musical recitals and listened to the
first melodious squeaks and squawks of their instruments. Forgotten homework
assignments were rushed to school for our children. In our heads we planned our
beautiful daughter’s future wedding. Vision of the bridal gown and the reception danced
in our heads. We couldn’t wait to have grandchildren and baby-sit and enjoy. We wanted
to tell our daughters that their children were just like them. Our daughter’s christening
gown is carefully preserved and awaiting to be worn by her own children. We wanted to
hold our grandchildren’s chubby little fingers in our hands and remember holding our
daughters chubby little fingers in our hand.
We used to answer the telephone and hear, “Hey mom, what’s up?” Now the phone
doesn’t ring. And it will never ring again with that sweet voice we so desperately would
love to hear. Now we are set apart. We are not normal anymore. People choose to walk
down a different aisle to ignore us. It is too painful for them to think about our lives.
They might take a moment to wonder how we go on. They say, “I can only imagine your
pain.” That is not true. No one can imagine it unless they live it. We now belong to a
new group. We never wanted to be a part of this group, bereaved parents. No one lines
up for this membership. We wish our membership would never grow. I am glad you are
not me.
Wednesday, September 29, 2010
bed rest
To think of bed rest is in a word oxymoron. You are not resting while in bed, you are a prisoner.
When you tell people that you are on bed rest, they imagine you lying on the couch eating bon-bons all day.
But it is entirely different.
When you are pregnant and put on bed rest, you tend to freak out. your whole world is shattered. Take the basic mental fear of the dangerous predicament you now find yourself. but the fact that you are a prisoner in your own home. Depending on the severity you might only get 30 min to stand in a day. Left alone with out any human compassion except day time television.
Then when you finally do talk to people, they act like your making it worse then what it really is. Like they know what your dealing with.
I hated bed-rest, the only thing that kept me going was the thought that if I listened, if I did what I was told that I would have my babies.
It's what gets every mother through it.
When you tell people that you are on bed rest, they imagine you lying on the couch eating bon-bons all day.
But it is entirely different.
When you are pregnant and put on bed rest, you tend to freak out. your whole world is shattered. Take the basic mental fear of the dangerous predicament you now find yourself. but the fact that you are a prisoner in your own home. Depending on the severity you might only get 30 min to stand in a day. Left alone with out any human compassion except day time television.
Then when you finally do talk to people, they act like your making it worse then what it really is. Like they know what your dealing with.
I hated bed-rest, the only thing that kept me going was the thought that if I listened, if I did what I was told that I would have my babies.
It's what gets every mother through it.
Saturday, September 25, 2010
Pregnant again.
It is almost always going to happen. After you went through a difficult pregnancy, experienced a loss, a mom will find herself pregnant again.
It is very worrysome, and trying for the mom to be. It is aslo hard for the dad to be as well.
The fears come back with vengeance. Many people will say to you, "Well, I am just so happy that you are finally over the loss." And you realize, people still don't get it. It's not that you have finally gotten over the pain of losing your child. Time just moved on. I mean your not supposed to all of a sudden stop living you life.
It's been 2 years since I lost the boys, and not a day goes by without thinking of them. Same if my child was on a trip w/ the grandparents, I would still think of her. Out of sight does not mean out of mind.
A new baby will and can never replace the lost baby. No two people are the same, even siblings.
You have heard me say this, talk through it. tell your fears letting out your emotions will help. you will learn so much of you and your self, but people will begin to learn more about you. And if they don't then they aren't who you thought they where.
It is very worrysome, and trying for the mom to be. It is aslo hard for the dad to be as well.
The fears come back with vengeance. Many people will say to you, "Well, I am just so happy that you are finally over the loss." And you realize, people still don't get it. It's not that you have finally gotten over the pain of losing your child. Time just moved on. I mean your not supposed to all of a sudden stop living you life.
It's been 2 years since I lost the boys, and not a day goes by without thinking of them. Same if my child was on a trip w/ the grandparents, I would still think of her. Out of sight does not mean out of mind.
A new baby will and can never replace the lost baby. No two people are the same, even siblings.
You have heard me say this, talk through it. tell your fears letting out your emotions will help. you will learn so much of you and your self, but people will begin to learn more about you. And if they don't then they aren't who you thought they where.
Wednesday, September 22, 2010
Worst things to say...
So this is gona cover a bunch of feelings rather quickly.
Some of the most annoying thing that have been said to me after the twins passed.
10) Could you imagine the college bills, your better off not having that over your head...
9) God knew you couldn't afford the medical bills...
8) It was easier this way...
7) They wher so small and early it shouldn't take you long get get back to "normal"...
6) They didn't know that they had something to fight for...
5) It happened for a reason...
4) It is a cross you must carry...
3) They couldn't hold on, it was to hard for them...
2) God took you twins because you couldn't handle having them...
And finally, 1) They would have made horrible decisions and God didn't want them to be on those paths.
Yes people have said these to me. I know that they where trying to be comforting at the time. But seriously. Looking at these phrases now, in what psychotic universe would these foul thoughts of reason bring any comfort.
Look, I'm not gona go on and on about how I felt when these horrible misguided gestures are said to me. My feelings are definitely coming through. I just want to tell you that a "I'm sorry to hear about your loss." is and will always be the best thing to say. Simple works well, in decorating, house hold repairs, computer programing. I mean I am just so amazed that after 2 years, that these are the best and most common phrases that are uttered to me.
I will ask that if any other mom has gotten a doosy that they post it. Give your own thoughts on it in hopes that someone else may read it and learn to think before they speak.
Some of the most annoying thing that have been said to me after the twins passed.
10) Could you imagine the college bills, your better off not having that over your head...
9) God knew you couldn't afford the medical bills...
8) It was easier this way...
7) They wher so small and early it shouldn't take you long get get back to "normal"...
6) They didn't know that they had something to fight for...
5) It happened for a reason...
4) It is a cross you must carry...
3) They couldn't hold on, it was to hard for them...
2) God took you twins because you couldn't handle having them...
And finally, 1) They would have made horrible decisions and God didn't want them to be on those paths.
Yes people have said these to me. I know that they where trying to be comforting at the time. But seriously. Looking at these phrases now, in what psychotic universe would these foul thoughts of reason bring any comfort.
Look, I'm not gona go on and on about how I felt when these horrible misguided gestures are said to me. My feelings are definitely coming through. I just want to tell you that a "I'm sorry to hear about your loss." is and will always be the best thing to say. Simple works well, in decorating, house hold repairs, computer programing. I mean I am just so amazed that after 2 years, that these are the best and most common phrases that are uttered to me.
I will ask that if any other mom has gotten a doosy that they post it. Give your own thoughts on it in hopes that someone else may read it and learn to think before they speak.
Tuesday, September 21, 2010
A full set.
This is something I do talk alot about with moms who beat the odds.
I was talking to a mom who has the full set. She needed someone to listen and basically know that her thoughts are normal. But something stuck me as odd. She was trying to walk on eggshells. She tried not to upset me because my sons didn't survive.
This amazed me. When you finally have a end to a TTTS pregnancy, you have this moment that the dust settles and you'll see what your life will hold. When you have survivors, that time is filled on anxiousness (If that is a real word). You second guess all of your decisions. Wondering, will your children have a disability? Will their quality of life be sub-par to what your community sees? And then it hit me. She and her husband questioned their very lives together.
This is not something that the doctors really tell you during your pregnancy. I say this because you have only weeks, days, or even hours to make gut wrenching decisions. And sometimes the life long impact a parent might not see.
Her marriage is on the rocks now. She said her girls needed so much help, and that she couldn't just get a sitter that she stopped being a wife. The doctors don't tell you that . Now she has a perfectly normal 4 year old, and the other will be lucky if she could feed herself.
She will have to find a way to explain to one child that, she didn't cause her sister needing so much help. She is already taking on the futures weight of uncertainty now compounding all of her emotions. I know that not having them is hard. But, hearing her I at least have a final end. I just need to deal with my grief. She and all of the other mothers who have 2, will never get that. They deal w/ TTTS the rest of their lives in a totally different way.
This is something I never imagined. They have to pick up and move on and guess what curves TTTS might still throw at them.
I feel for them the same way they feel for me. They have to keep their face straight, and not wonder, for if their children see them second guessing their decisions. Their children could be effected by that.
I was talking to a mom who has the full set. She needed someone to listen and basically know that her thoughts are normal. But something stuck me as odd. She was trying to walk on eggshells. She tried not to upset me because my sons didn't survive.
This amazed me. When you finally have a end to a TTTS pregnancy, you have this moment that the dust settles and you'll see what your life will hold. When you have survivors, that time is filled on anxiousness (If that is a real word). You second guess all of your decisions. Wondering, will your children have a disability? Will their quality of life be sub-par to what your community sees? And then it hit me. She and her husband questioned their very lives together.
This is not something that the doctors really tell you during your pregnancy. I say this because you have only weeks, days, or even hours to make gut wrenching decisions. And sometimes the life long impact a parent might not see.
Her marriage is on the rocks now. She said her girls needed so much help, and that she couldn't just get a sitter that she stopped being a wife. The doctors don't tell you that . Now she has a perfectly normal 4 year old, and the other will be lucky if she could feed herself.
She will have to find a way to explain to one child that, she didn't cause her sister needing so much help. She is already taking on the futures weight of uncertainty now compounding all of her emotions. I know that not having them is hard. But, hearing her I at least have a final end. I just need to deal with my grief. She and all of the other mothers who have 2, will never get that. They deal w/ TTTS the rest of their lives in a totally different way.
This is something I never imagined. They have to pick up and move on and guess what curves TTTS might still throw at them.
I feel for them the same way they feel for me. They have to keep their face straight, and not wonder, for if their children see them second guessing their decisions. Their children could be effected by that.
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