Thank you for understanding this, and being respectful of what my experience- and the experience of many other moms- is.
Not all people who are diagnosed with this type of pregnancy situation will make the same decision that I did- but this is my daughter's story, so I am telling it from the perspective of our choice after her diagnosis.
Sometimes I have the (sad) opportunity to talk to a mom who is currently pregnant and who has received a Limb Body Wall Complex diagnosis. A mom who is just beginning her journey and who has decided to continue her pregnancy.
This is always a difficult conversation to have, as I am so far beyond that desperate place and even more so, I am at a decent place as far as my own bereavement.
I don't want to be guilty of using one of those hated euphemisms- the "it will get better in time" or, "everything happens for a reason". I am somewhat close to "normal". And even though I am a loss mom, I am still at risk of saying the wrong thing.
This is especially difficult when I'm speaking with someone who shares my religious beliefs. This post will be from that perspective. It may be a little jumbled up, as I work through what I am trying to say, because it's a difficult concept to see with any clarity.
I have worked hard to find acceptance with my own faith and I have come out of a very dark place with that faith still intact.
It's hard to remember, sometimes, that each of us has to walk that walk on our own- that this is one path where the occasional companion will lead you in the right direction, but ultimately, it is a solitary journey.
There was a question that I was recently asked, and I hesitated to answer it because I didn't want to be sharing a bland statement of an idea that this mom just wasn't ready to entertain.
"Why is God punishing me?
I hesitated to answer that because I had been there. And I didn't want to hear platitudes then, any more than I am sure she doesn't want them today.
But I did answer.
"You are not being punished- you have been given a gift. Any other mom would not have been able to love and cherish your baby like you do- you were chosen BECAUSE you are such a beautiful mother. You see your baby as what she is, beautiful and worth the sacrifice- and only a truly loving mother could do what you are doing.
You have said - she is worth this.
She is so important that even if her life only lasts minutes- her mark in this world is so necessary that I am willing to lose part of my heart for her."
That's what I have been ruminating over since I sent that message. Her response, in case you're wondering?
"I needed to hear that."
In the whole carrying to term dynamic is a mindset that favors viewing the child as a gift, not a punishment.
Now, this isn't to say that the whole loss mom guilt thing is not figured in there. It is. I feel incredibly responsible for Beatrix's diagnosis and death. I always will.
Neither does this mean that we see our children's diagnosis as a positive or view our situation as some type of sick martyrdom, or a Munchausen by Proxy type of illness, as some opponents of carry to term imply.
What I want to say is- my child is (was) a gift. I wasn't "punished" with a terribly sick baby.
I was given her small life- and that life was something precious and valuable.
The rarest stones are usually the most sought after. But in this type of "situation", these rare gems are routinely seen as a punishment by those who would choose not to grab on to them with both hands and hold tight.
It was an honor to hold Beatrix's hands in mine. Can you imagine? Such an honor to have been chosen to be her mother.
Not punished with her- how could anything so beautiful be a punishment? How could anything so precious be a punishment?
I use that word again, not as we generally mean precious, but as it was meant to be used- to signify something:
We need to know this.
We need to be consciously aware of the value of our fragile children. We need to intentionally understand that there is nothing- not one thing- that is a punishment in this experience.
Part of it is the perspective from which you are looking at your experience.
I looked, from the beginning, at my experience from the perspective that God knew what He was doing. Of course, like any normal person I questioned that wisdom when I was at my lowest, shaking my fist in anger- but deep down the struggle was more about reconciling my own understanding of things with His.
It was the fight elucidated here. Any post tagged "faith" is part of that fight- and what I write here is such a small window into what actually is.
I recognize now that my struggle was more about willfulness than viewing her as anything less than my beautiful child- about acceptance of my lot in life.
It was never truthfully about feeling punished.
My daughter was such a gift- if you stumble upon this searching for a carry to term answer because you have received this type of diagnosis-
your child is a gift.
Safely tucked away in there, hidden in the shadows.
Your child matters to the world.
Every second of your baby's life is part of a history that we have only the slightest inkling of.
My child- that tiny girl that I held as I cried- that I held as she was continuing in her journey home- that child has the capability to change lives. And I want to be clear- I am not saying that I have the capability to change lives-but that she has the capability to.
Your child is a gift.
Your child is so important to the story of humanity that people may be afraid to be a part of their experience- but that isn't saying something about the value of you child. There is something primal and honest about this experience that some people may not be ready to see.
My Beatrix opened a window into something deep inside of me- feelings about the frivolity of everyday life were brought to the forefront. Most people don't want to know about those things. They are happy with watching the occasional sad news story and shaking their head over an item that they don't agree with.
We can't. These beautiful babies force us to look at things with an eye towards eternity, which is the reality that everything revolves around.
This is a gift. This is necessary- so necessary. So valuable.
Your child is a gift, one that may be meant to be shared through some type of advocacy, or one that may be meant to sleep secretly in the deepest parts of your heart.
Please make no mistake, you have not been punished. You have been given something of great worth. A baby that was chosen specifically for you.
This little human, your baby, is so important to the world, so necessary that even if their life on this earth lasts for seconds, their mark will be something that will shine for all of time.
And as an ending note to you- momma- you chose to let them make their mark- to let them live the natural course of life- to disbelieve the concept that your baby is/was a punishment.
You chose to see the value of their existence, and received the ultimate gift of holding those tiny hands.
Brushing that downy soft hair.
You had the privilege of knowing them more deeply than any other person ever will. You felt every single movement that they ever made, were the first and one of the only voices they ever heard.
You were their everything.
Your child is a gift. A baby can never be a punishment, no matter how flawed her form may be.
And you- you are the receiver of that most precious gift.
Cherish the time that you have been given.
Love that baby freely.
And don't ever let anyone try to convince you that your baby was anything less than an exceptional privilege- especially not yourself.
This is one of my greatest gifts: