Monday, November 10, 2014

It doesn't matter

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 that 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 that we had were not really there.

The organs growing outside of her body.

Her mangled spine.

Her too large head.

The idea seemed to be that if doctors were wrong she was worth carrying- except that even if doctors were right, she was still worth carrying- and saving. 

We aren't promoting that idea when we say, "maybe they are wrong."

We are expressing that 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 that 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 that conception is the beginning of life. That each individual has purpose and fulfills it on a timetable set for them.

If you believe that we may not understand everything that will happen in this world, but we know that there is One who does- and that 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 that 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 that 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.

Sunday, November 9, 2014

Capture Your Grief



I stopped. This time not because of an event- but because it was not helpful. I think that for someone exploring their new grief feelings, these types of excersizes can be helpful- but the exploration became negative for me.

There comes a point when we have to walk around the grief that sits too heavily in our hearts. It's like a rabid dog- waiting to bite you. You tiptoe in it's presence, and you let it lie.

This was kicking it awake- and I am not interested in that- being present in my grief. I have been bereaved, but my life is peaceful now. And I have no desire to kick that particular dog. 

Some people may see this as burying my head in the sand, but it's not that- it's just reality, and health, and understanding that there is a season for everything under the sun. 

I will see her again- so this life shouldn't be filled with her death. That's so wrong- because she was so much more than her death.

She was alive, and that's what I want to capture and hold close. Close my hands around it, keep it sweetly clasped inside of the confines of my heart.

She was alive. 

I'm going to share another photo of her, from her life. It will be difficult to see what I want to celebrate, so I am including the original, unaltered photo, and then two more specifying what I am showing you. 


An ultrasound at 19 weeks:





Here are all of her sweet parts labeled:



And this? This is her smile:


My sweet girl was alive. That's what I want to capture.

Tuesday, October 14, 2014

Capture Your Grief-Dark and Light- October 2014


Love makes me light.
And tiny feet.
Listening to music (currently, The Smiths)
Sitting in church.
Gardening.
The light in me comes from the service that I can give to someone else. 
In whatever capacity they need. 


 

That room makes me dark. The "what-ifs". 
Reading the news and seeing diseased and abused children.
Keeping my service for self-preservation makes me dark. 

Monday, October 13, 2014

Capture Your Grief Photo Challenge-Season- October 2014



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.

Sunday, October 12, 2014

Capture Your Grief Photo Challenge- Music- October 2014

I love music- there is always something playing in the background in my house. I can appreciate a large cross-section of music, but I lean towards either folk music (this comes from growing up with a mother who played classical guitar and who filled my first memories with The Mamas and the Papas, Pete Seger, etc.) or early 90's New Wave music.

In my initial bereavement three CD's were my 24/7 companions.



Dave Matthews Band- Big Whiskey and The GrooGrux King. This CD was the first released after the loss of the DMB's sax player. This measure of pain and remembering was meaningful in helping me to clarify my own thoughts. We used the song "Baby Blue" for Beatrix's memorial video, which is in the left side bar. When you listen to the lyrics it will become immediately apparent why.








Mumford and Sons- Sigh No More. Such a Struggle with God and faith is elucidated in this music. I could identify with some of the frustration about expectations, the anger, and also appreciated the conclusion- the clarification of the Promise.

There is much debate, online, over whether this is a religious album. I think debate is ridiculous- it paraphrases Revelations, the Psalms, directly references heaven and God- while it may not be a "Christian" album, it nevertheless speaks about the relationship between God and Man. I found a lot of comfort in this, and look forward to seeing my daughter with Grace in her heart and flowers in her hair, at the conclusion of this life.


I was given this CD- a friend didn't like it. I didn't think I would either. What a shock to find that it was one of the most meaningful in such an important period in my life.  Because it is so obviously about loss, I tried to find information about it online- I was curious to see who he had lost. I found some information leading me to believe that this was based on loss as the result of infidelity. There are some beautiful songs here, and I am so grateful for the happy mistake that brought it my way- the crisp sound of it was a refreshing change from the murky emotions I was feeling.


Saturday, October 11, 2014

Capture Your Grief Photo Challenge- Altar- October 2014

So.

I have been writing this one since the first day of the photo challenge because when I saw it on the list I understood that it was so important that it would require more attention than the rest of the challenges.

I have to be clear- this is not directed towards anyone- it's solely for me. 

A confession of my own convictions.

It's the type of subject that would be a normal post for me as I sort out my feelings about my loss and how it's affected my faith. It's actually something that has been floating around in my head for quite some time now, though slightly different in the specifics.

The definition of altar is as follows:

"an elevated place or structure, as a mound or platform, at which religious rites are performed or on which sacrifices are offered to gods, ancestors, etc."


This is my altar, and it's the only altar that I will ever worship before.





I think that sometimes in this baby loss netherworld- this place where mothers and fathers inhabit the world with one foot in heaven- I must be very cautious in my remembering.

My child is not a god.

And I do not think that she should be worshiped as such- 

I am Christian, and I only worship one being. 

And that's not my child.

This is the point where I must be clear, and I must separate myself from the mysticism that seems to run rampant throughout the baby loss "community"- and in saying that, I get that some people are are mystics. And I have to say again- this is directed inward, towards me- not them.

I think that it's a beautiful thing to have a special place in my home to keep my Beatrix's memory box, her sweet blankets and the mold of her foot. I see it as no different than the photos I have of my mother, and the quilt that my great-grandmother made.

But an altar? 

An altar, by its purest and most correct definition is a place where sacrifices happen. 

Where worship takes place.

I think that I must guard my heart, in this instance. 

The tendency to fetishize my child is strong. 

I would like nothing more than to believe that she speaks to me from beyond the grave, or that I can depend on her for some otherworldly guidance. But the truth is, she doesn't and I can't. 

The truth is that she is in Paradise, and I am here, and that my soul longs for what she is already experiencing. 

And that she has absolutely no longing for what I am experiencing.

It seems harsh on its face- a brutal statement for the tender heart- but it means so much more. 

My daughter would not want me to have an altar dedicated to her- because she is where she is. She is already touching the hand of the Christ who was there at the beginning of the universe- and if she wants anything for me, it is that I join her there. That I don't let anything come between myself and the God who holds her so gently in the palm of His hand. 

If she wants anything she wants me to remember with the understanding that she has already received her reward. 

That even if my longing for the second chapter of my life to begin is, in part, because I miss her and I want to see her once again- that isn't the focus of my eternity. 

This isn't something to think lightly about. 

It's an opportunity to reexamine my own convictions and see where I can falter in my own thoughts and actions. 

Many may see this as dogmatic, and as a judgement, but I'll be clear again- this is my confession.

My reaction. 

The altar in my minds eye is an altar dedicated solely to the Savior who took my sins onto Himself and who redeemed me- and my child- ensuring that while we can not be here together, one day we will be.

Friday, October 10, 2014

Capture Your Grief Photo Challenge- Memory- October 2014

In Memory~

This is my shadow box, with sweet Beatrix's tiny footprint. 

We {and our friends/family} have done a number of things in her memory. 

My husband and I began a support site for families facing the same diagnosis- 

www.limbbodywallcomplex.net

But that will be my inspiration photo, so I'll save more for that later. 

One of my close friends is currently training to run a half-marathon in My Bea's memory, for Saint Joesph's Children's Hospital. 

Various family members have donated to a number of organizations in her name. 

Our current memory project? We are in the process of writing a proposal to our church counsel, to ask that we be allowed to fund-raise for a new playground. 

We would like to do this by her 5th birthday, which would be December 2015. 

We also have begun planning a new aspect of support which is often overlooked, that we are so excited about- but that's a future goal. 

Much of our charitable giving and activities revolve around our daughter- and all of those gifts, whether of time, talent, or money, are done in memory of our daughter. 






 
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