She Brings Joy

One day, I will be old.

It's not me- this woman you see standing here. The woman who survived this death. I am stuck in here, closed within the confines of my skin. 

Dear sweet joy-that-you-are,

This is about anger, and how change affects people. If you aren't interested in walking the entire grief journey, and only want to hear the sorrowful, gentle parts- stop reading here. This is not sorrowful, or gentle.

 

I miss her, ever so much, today.

I love you so....









 Sometimes it just makes everything ache.

I just want you to know that this will be about a touchy subject.

I will turn off the comments at the end, because it is so touchy that people will want to chastise me and tell me that I am cruel. But it is a subject that I have contemplated for a while, and I feel the need to get my thoughts off of my chest. Since this is my grief journal, I am writing it. It is part of my journey.

The other day I was conversing with another poor pregnancy diagnosis mom in a private forum child loss group on Facebook. We both knew the others story, at least the peripherals of the stories.

I carried to term, and she did not.

While I was very hostile towards those who terminate, in the immediate time period after my loss, I am now very, very careful not to pass any judgement on anyone for the choices that they make. I have friends who have chosen differently than I have- I don't agree with that choice- I think its wrong, but I understand that not everyone is of the same mind as I am.

So, in the course of that conversation, someone else comments how wonderful this woman was as a mother- how she made the best possible choice- the only humane choice- for her child. How she saved her child needless suffering. She spoke of how selfless her act (of terminating the pregnancy) was.

This is a common theme within the child loss "community"" when it comes to women who have terminated for medical reasons. The suffering of the child is most often given as the reason for terminating the pregnancy.

If continuing the pregnancy is futile (because the child will die), then why prolong the child's suffering?

This attitude bothers me every single time I see it. It bothers me when someone, who may be a loss mother, but who has not had the experience of having to make that choice says it. It bothers me when women who have terminated for medical reasons says it.

Statements about selflessness in terms of ending your pregnancy, imply that those of us who continue our pregnancies are selfish.

Statements about ending your pregnancy because you did not want your child to suffer, imply that those of us who continued our pregnancies are causing our children unnecessary suffering.

Most people in loss groups will state that the choice to continue the pregnancy or not should be left to the parent involved- that no one should judge that decision... and will then proceed to make an affirmative judgement about termination. This puts some of us who have continued our pregnancies in an uncomfortable position.

Do we state, unequivocally, that our children did not suffer any pain during pregnancy and birth?

Do we let it go, hurt at the implication that we would let our children suffer? They most definitely don't let it go if someone comments about Carrying to term- they almost always find it necessary to post a caveat statement about their termination... but again, we are supposed to stay silent. When people are implying that we allowed our children to suffer.

Do we pull up the facts about fetal development and pain that reinforce carrying to term as a loving option for parents? What about the abundance of available information   showing that moms who carry to term have better psychological outcomes, overall, than moms who terminate?

Most of the time, I try to ignore those extremely hurtful implications. But lately it has become overwhelming. This sense that I want to take something back for my daughter and all of the tiny babies like her.

Terminating a pregnancy for a fetal anomaly is no more scientifically proven to limit suffering than carrying to term is. Some of us who carry to term believe that terminating causes more pain and suffering. Some of us want our children to have no knowledge of anything but peace and light- and we believe that continuing the pregnancy is the best way to do that. My daughter was given every single test in the book, and not once did she ever exhibit any sign of being in pain

Those of us who carry to term believe that we are putting our baby's needs before ours- acting most selflessly. Some of us fight to have elective C-sections in order to save our children the stress of the birthing experience. Some of us risk our future childbearing capabilities to bring those fragile children into the world. We are anything but selfish in our decision to continue our pregnancies- we are giving our children a gift of time.


As many mothers who have made the decision to carry to term can tell you, termination is the only option offered by most doctors. There is a tremendous amount of support out there for women who have terminated for medical reasons.

Most pro-life people even believe that terminating for gross fetal anomaly is acceptable. Those of us who make a different choice are viewed as religious nuts, fanatics.

Invariably, when I tell someone about my experience with Beatrix, people will end their part in the conversation with the statement that they thought what I did was beautiful, but they believed that women should have the choice to terminate their pregnancies in that same circumstance.

Why is this necessary? What does your belief in termination for fetal anomalies have to do with my beautiful girl?

And even more distressing....

you do realize that in essence, what you have just said is that you think my childbirth story was beautiful but you would like to keep the option, for children like my daughter- beautiful, breathtaking little souls- to have their lives cut short, open.

Even if you believe this- is it appropriate to the conversation? Is it a valid end to my daughter's story?

I am so very tired of bending over backwards to try and be respectful of other people's decisions and not receiving the same courtesy. I am so tired of the implication that somehow, I am a selfish person who chose to give birth to satisfy a need in me.  A person who disregarded my child's needs.

I am a good mother.

My child did not suffer.

Children carried to term with a poor prognosis are closely monitored to make sure that their lives are comfortable- both before and after birth, through perinatal hospice practices.

The assumption that terminating a pregnancy like this is the only "humane" thing to do is insulting to those of us who continue ours.

Please, when commenting on this subject, if you are supporting a mother that has terminated for medical reasons, and there are other moms sharing the same space, be mindful of their experiences and how your words could be taken. Don't make judgements or identify one decision as correct and one as not- most of us who carry to term are bending over backwards to show those who terminate that we understand and we don't judge them- it would be nice if the same courtesy were extended towards us.

As I said before, I am disabling comments here. If there is something terribly important that you need to say you may email me at the email address on the sidebar.

Otherwise, be kind to one another.

(Written when Baby M was eight weeks old.) 

She has colic. She doesn't like to be put down.

I have been meditating on this thought the last few days.

Because I touched your skin, my hands are holy.

The weightiness of ushering someone into death is something that clings. It is suffocating. Like too much perfume in a small room.

But I can still feel the weight of you in my hands, and that has to count for something, doesn't it?

These average hands have been indelibly marked- you have been carved into them. My palms feel electrified at times. Like something was retained.

Something of you is left in my grasp.

My hands, which have been used for such frivolous things as washing the dishes and tapping away at the computer, held you.

For this reason they should be enshrined. I should have been wearing gloves all of this time to protect your epithilials from dropping off into the dust.

I could have been one of those crazy old ladies that children are frightened of.

Oh, these hands. They touched you. They held your hands and your feet. They reached between your lips and touched your tongue.  I just wanted to touch a part of your body that was functioning properly. These hands held you for your entire life. These hands held you in death, as you stopped.

Stopped beating, stopped breathing. Stopped living.

I often think about the parts of you that I miss. The parts that I will never see again. I don't often think of the parts of me that are beautiful because they held you. The parts that are holy and well formed for loving a baby who was not so well formed.

When I die, my gravestone should say, "These hands held love."

It's late.

I think of your small face, held in my hands. I touched your skin, and it makes my skin seem holy somehow. That close to heaven, I was- it's still unbelievable.

When I close my eyes I can still hear that heartbeat sound, and I can still feel the tension in the air and all I want, when I close my eyes, is to imagine being with you again.

I want two girls, because I am greedy. I want you holding hands in matching sister sister headbands, with your old time names and your hair in pigtails.

Her hair is red, this tiny sister of yours.

Oh, how I hoped that it would not be.

Every day, I realize that she looks just like you did- when your face was animated with life. Her mouth and chin are shaped the same, because you both look like dad. It used to hurt to see his face at a certain angle because it reminded me of what I could no longer see. Now, I spend hours gazing into her face, and it's not yours, so it's o.k.

I wish that you were here. I wish that this thing wasn't always sitting in the back of my head, ripe for emotion and ripe for tears.

I wish, at this point, to have a dream of you- I just want to be able to imagine holding you safely- just one time. I would like to hear your lispy toddler voice. You would be almost two and a half. I have missed that.

Two and a half years and I think of you every day.

I went into your box the other day.

I pulled out the small pajamas and crushed them into my face- the delicious smell of you filled me for a sharp moment in time. I remembered, then.

You are so close to my heart tonight.