- Saturday, May 09, 2015
- 0 Thank You For Visiting
Today, I have written my first blog for Save the 1, a pro-life organization which advocates for the lives of babies general included in pro-life "exception" laws.
This is part of the direction that I will be moving towards from now forward, and when I do contribute, I will be linking posts here.
This blog will, however, remain focused mostly on grief and loss, and my efforts with the limb body wall complex website and support group.
This is part of the direction that I will be moving towards from now forward, and when I do contribute, I will be linking posts here.
This blog will, however, remain focused mostly on grief and loss, and my efforts with the limb body wall complex website and support group.
- Friday, February 13, 2015
- 0 Thank You For Visiting
I read this today.
God bless Live Action, and Life Site news, and all of the other groups who work tirelessly to fight for the rights of the unborn every day.
But- this article?
Not only is it scientifically inaccurate (I'll get to that later) but it doesn't matter if this was divine intervention or a misdiagnosis.
While I was pregnant with Beatrix, a number of people came to me with stories about how they knew someone who had received a poor prenatal diagnosis, but who went on to have a perfectly healthy baby.
The implication here was, I should hold on because my physicians may be wrong. My daughter may live -- in fact, maybe all of those things which showed up in the countless tests we had performed were not really there.
The organs growing outside of her body.
Her mangled spine.
Her too large head.
God bless Live Action, and Life Site news, and all of the other groups who work tirelessly to fight for the rights of the unborn every day.
But- this article?
Not only is it scientifically inaccurate (I'll get to that later) but it doesn't matter if this was divine intervention or a misdiagnosis.
While I was pregnant with Beatrix, a number of people came to me with stories about how they knew someone who had received a poor prenatal diagnosis, but who went on to have a perfectly healthy baby.
The implication here was, I should hold on because my physicians may be wrong. My daughter may live -- in fact, maybe all of those things which showed up in the countless tests we had performed were not really there.
The organs growing outside of her body.
Her mangled spine.
Her too large head.
Her twisted feet.
Her paralysis below the waist.
The idea seemed to be that if doctors were wrong she was worth carrying- except even if doctors were right, she was still worth carrying and saving.
We aren't promoting this idea when we say, "maybe they are wrong."
We are expressing we believe a baby misdiagnosed is preferable to one who has been affected. We are separating babies with anomalies from those without.
It doesn't matter.
Or it shouldn't.
But everyone knows it's only common sense for a mother to prefer a healthy baby over one who is ill. That's logical.
But it's not, if you truly believe conception is the beginning of life. If you believe each individual has purpose and fulfills it on a timetable set for them.
If you believe we may not understand everything which will happen in this world, but we know there is One who does- and He understands far more about why my daughter was malformed then I ever will.
It doesn't matter if this child was misdiagnosed or not. If this child would have had all of these issues -- she would still have been the child she was meant to be.
Diagnosis doesn't matter, because she was a human being. The decision to continue a pregnancy should be focused on the fact that a baby in the womb is a human being. Killing human beings is wrong.
Always.
That's what we should focus on. Not the incremental steps. Not trying to convince people through small tugs in the correct direction.
I read this today, "'We know through painful experience that freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed. Frankly, I have yet to engage in a direct-action campaign that was "well timed" in the view of those who have not suffered unduly from the disease of segregation. For years now I have heard the word "Wait!" It rings in the ear of every Negro with piercing familiarity. This "Wait" has almost always meant "Never." We must come to see, with one of our distinguished jurists, that "justice too long delayed is justice denied."'
My daughter was more than a diagnosis, yet every time we toss one of these articles out in the world, we remove the humanity of the small life involved.
As for the accuracy of the original article:
Because one of Beatrix's birth defects was an omphalocele, I am intimately acquainted with the workings of the fetal abdomen.
At 10 weeks- when this woman claims a physician told her that her daughter's organs were positioned outside of her body, and this was a sign of a lethal disorder, it would be completely normal for a baby's intestines to be on the outside of the abdomen. It's part of fetal development. The growth of the intestines outpaces the growth of the abdomen, and for a few weeks early in the baby's life there is a point when they are outside of the abdomen. This lasts until the baby is about 12 weeks GA. A physician would expect to see what would later be called an abdominal wall defect in a 10 week old fetus.
We need to be cautious about sharing emotional stories, without clear details. They do not work well as a testament to our integrity.
The idea seemed to be that if doctors were wrong she was worth carrying- except even if doctors were right, she was still worth carrying and saving.
We aren't promoting this idea when we say, "maybe they are wrong."
We are expressing we believe a baby misdiagnosed is preferable to one who has been affected. We are separating babies with anomalies from those without.
It doesn't matter.
Or it shouldn't.
But everyone knows it's only common sense for a mother to prefer a healthy baby over one who is ill. That's logical.
But it's not, if you truly believe conception is the beginning of life. If you believe each individual has purpose and fulfills it on a timetable set for them.
If you believe we may not understand everything which will happen in this world, but we know there is One who does- and He understands far more about why my daughter was malformed then I ever will.
It doesn't matter if this child was misdiagnosed or not. If this child would have had all of these issues -- she would still have been the child she was meant to be.
Diagnosis doesn't matter, because she was a human being. The decision to continue a pregnancy should be focused on the fact that a baby in the womb is a human being. Killing human beings is wrong.
Always.
That's what we should focus on. Not the incremental steps. Not trying to convince people through small tugs in the correct direction.
I read this today, "'We know through painful experience that freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed. Frankly, I have yet to engage in a direct-action campaign that was "well timed" in the view of those who have not suffered unduly from the disease of segregation. For years now I have heard the word "Wait!" It rings in the ear of every Negro with piercing familiarity. This "Wait" has almost always meant "Never." We must come to see, with one of our distinguished jurists, that "justice too long delayed is justice denied."'
My daughter was more than a diagnosis, yet every time we toss one of these articles out in the world, we remove the humanity of the small life involved.
As for the accuracy of the original article:
Because one of Beatrix's birth defects was an omphalocele, I am intimately acquainted with the workings of the fetal abdomen.
At 10 weeks- when this woman claims a physician told her that her daughter's organs were positioned outside of her body, and this was a sign of a lethal disorder, it would be completely normal for a baby's intestines to be on the outside of the abdomen. It's part of fetal development. The growth of the intestines outpaces the growth of the abdomen, and for a few weeks early in the baby's life there is a point when they are outside of the abdomen. This lasts until the baby is about 12 weeks GA. A physician would expect to see what would later be called an abdominal wall defect in a 10 week old fetus.
We need to be cautious about sharing emotional stories, without clear details. They do not work well as a testament to our integrity.
- Monday, November 10, 2014
- 0 Thank You For Visiting
My season would be from the late Fall into early Winter. From the moment of the first falling leaf I begin to walk back into that space where she is still being held so gently in my arms.
The last months of my pregnancy were so terrible. Not because we knew that she was going to die but because we received very little support. The fall was spent traveling to physician's offices, being poked and prodded in an attempt to find out what exactly was wrong.
My family also marks October as a time of loss in general- we don't do well when it comes to October. I lost two cousins on October 25th- 20+ years apart. Brothers- my aunt has been through this baby-loss horror twice, on the same day, decades apart. One baby lost to SIDS and one grown-but-not-grown man to an automobile accident.
My mother will also be gone for two years this October 18th. It seems that the world shouldn't be turning without her in it.
- Monday, October 13, 2014
- 0 Thank You For Visiting
I'm a little behind the times with my challenges- M was ill, and I ended up using my late night "personal" time for sleeping.
My "before" photo is me during my last successful pregnancy, before losing my Bea.
This is me before:
Before I knew that women who did everything right could still have a baby with birth defects.
Before I knew that women in developed America had babies with birth defects.
Before I knew that birth defects didn't always mean a future of surgeries and hospital stays.
Before I knew that you don't have to be a drug addict or an alcoholic to have a baby with birth defects.
Before I knew that there was such an horrific thing as perinatal hospice.
Before I knew that one in four pregnancies will end in loss.
Before I knew that sometimes euthanasia can be practiced passively.
Before I knew that sometimes parents leave the hospital with empty arms.
Before I knew how to retain a calm exterior when I am quaking inside.
Before I knew that the people most interested in your sad stories are usually the ones who you should stay away from.
Before I lost my very, very best friend (32 years, down the drain).
Before I had ever seen a person die.
Before I understood genetics and the probabilities involved in having good genes, and the miraculous thing that is life- so much could go wrong. Each one if us is a miracle.
Before I was who I am now.
- Friday, October 03, 2014
- 0 Thank You For Visiting
Last night, I received an email from a family who has just learned that the baby they have so joyously carried for the last four months, has been affected by Limb Body Wall Complex.
This is the first baby of a very young couple.
Please keep them in your thoughts and prayers as they navigate this territory. Please keep me in your prayers, as I try to help them in a situation for which there is no help.
This is the first baby of a very young couple.
Please keep them in your thoughts and prayers as they navigate this territory. Please keep me in your prayers, as I try to help them in a situation for which there is no help.
- Thursday, June 28, 2012
- 3 Thank You For Visiting
