Saturday, January 24, 2015

Tonight is just about remembering.

The weight of her body in my hands as she slowly slipped into the great beyond. 

The softness of her skin against mine.

The other night I was driving my car, and one of her songs came on. I cried, for the first time in a long time. A big, ugly cry.

I cried for her little life. I cried for my mother. I cried for myself, suspended like a bridge between these two women. 

I sometimes have this feeling in the palms of my hands- they are electric. Those are the times that I miss her the most. When she is missing from me. That electricity is the weight of where she rested. A memory imprint on my flesh.

I miss her, and I miss her. I'm full of missing and empty and wanting and electricity.

My lifespan isn't enough to keep hold of all of this energy. I hope to have them both, when I close my eyes. 

Tonight is just about remembering. 

Tuesday, January 6, 2015

Hayden

Please pray like you have never prayed before-

There is a little boy who is surviving with Limb Body Wall Complex, against the odds.


Wednesday, December 17, 2014

What People Still Say. After Four Years. Unsolicited.



You Didn't Even Know Her, 
How Could You Possibly Miss Her?



I wish you could remember her with me-
what does it take away from your life?
An uncomfortable feeling that you can walk away from, 
when you choose?
But you can't, and I understand. 

Her body makes you cave and it reminds you of where you came from.

Her small self took up so little space in this space.

My remembering takes up so little space in the world.

If you do not want to remember her with me- please leave me to miss her myself.


It's Been Four Years Now, 

It's time to let go



You never held her- her tiny hands were so graceful.

Because you did not hold her,  you can not possibly understand how difficult it was to let her go.

When you say "move on", you really mean- be the who that you were before she came.

When you have touched something so precious,
so beautiful-
you can never be who you were before.




I Know That You Don't Understand Right Now, 
But This Is All Part Of God's Plan


A most pervasive myth. 

Death was never part of God's plan- 
never.





She is so very beautiful.
I have a finite amount of time and energy in this world- 
not nearly enough time to illustrate
why I will always be changed.  

Why I will never stop missing her.

Why I will never get over her-
whether it's been four or forty years.

Why I will never believe that it's 
part of God's plan that my daughter died.

And-

as long as I'm here and she's there, 
I will tell the world about her. 

Saturday, December 13, 2014

She would be four today

I saved my sleep for later, wanting to sit alone while the new day began. 

She would be four today. 


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. 

 
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