She Brings Joy

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.

So.

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. 

Support. 

My sacred place would have to be home. Inviolate, it houses everything that I love about this world, and keeps us all in each other's reach.

Books.

I journal here- and I haven't been journaling often, lately. This project is my segue way back into writing. Not really photo challenge worthy, but it is what it is

Today's challenge is "now".

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.

Day 2- Heart

Two years ago I attempted to finish the entire Capture Your Grief photo challenge for pregnancy and infant loss month. My mom passed away and I was unable to finish- my grief was too deep to contemplate finding a way to help walk through it.

So, this year we attempt to do it again.

I am a day late posting, but here is my day one, "Sunrise":


Because I work nights, I am unable to get up early enough to catch a sunrise- we also live in the middle of the woods and can not really see the sunrise (or sunset). By the time it is visible to us it has already reached full light- the tops of the trees illuminated. No matter how many times that I have attempted to catch a sunrise here, I have no success.

This is my post for Sunrise- my subsequent baby- sunrise after a very dark night. She is radiant. Her light creeps into every corner and knocks out all of the shadows.


I will also be posting my photos on Instagram, @shebringsjoy.

Two weeks ago a co-worker said to me, as we were finishing up our nightly closing tasks, "I needed to tell you something. I really respect the decision that you made to follow your convictions and not have an abortion when your daughter was diagnosed with her birth defects."

If this would have been the end of the statement then we could have called it a night. I would have gone home with the understanding that my Beatrix had impacted yet another life, and that in the future he may have reacted in a positive way if faced with the same situation.

But this was not the end of the statement.

He continued.

"I don't agree with what you did. I think it was (scientifically) wrong, but I respect you for doing what you thought was right."

It baffles me that after almost four years, I still find it necessary to defend the choice made. A choice that wasn't just a personal preference, which I thought was above reproach in our society of "choice", but which was the right choice. 

Keep in mind- I never asked him for his opinion. I didn't request his input on a life situation that occurred during a time that I didn't even know him- nor was I looking for any validation of my decision from him. He popped this statement up in the middle of another conversation. No warning, no prelude. 

Because I am accustomed to people sharing their opinion about my (personal) decision, I had a number of ready answers to his "scientific" objections to me allowing my daughter to live. 

I will tackle the three responses that I gave to him. They are the three most common reasons why abortion for fetal anomalies should remain available for all women, at any point of gestation. 

First, we need to be very clear- terminating a pregnancy does not mitigate grief. In fact, some studies have shown that terminating your pregnancy in this situation may make grief feelings more intense- and surprisingly, we are now seeing that grief intensity may be especially high in earlier term abortions. (1) (2)

(The inception of newer, earlier testing may not be the boon that medical professionals are hoping that it will be. The thought that earlier testing may provide better options for families, in terms of ending a pregnancy "before you get attached," may not bear out to be true.)


Traumatic grief has been shown to accompany every single post abortion experience in some studies, (3) (4) with women requiring intense psychotherapy after said termination. (5) (6) (7)

You are not going to mitigate a woman's grief by encouraging her to go through with a termination. In fact, you may be causing more harm- more often than not maternal bonding has already begun. A life with this baby has been imagined. Names may have already been chosen. Mom may feel movements. (1) (8) (3)

In addition, women are often pressured to terminate these types of pregnancies without being given information about carrying their pregnancies to term. Studies have shown that women who choose to terminate a pregnancy where a fetal anomaly has been shown, will often do so within 72 hours of receiving a diagnosis. (9) 

Physicians favor termination over carrying to term for liability reasons- and will often pressure families by stating that "time is running out", coercing them into make a tremendously difficult decision before they have been able to gather and process enough information to make a medically informed choice. (10) (11) (12)


Rarely are families given the option of perinatal hospice or any information about choosing to continue their pregnancy.

Overall, opinions which state that a mother must be able to terminate out of concern for the emotional well-being of the mother is based on our emotional response. Studies show, quite definitively, that terminating a pregnancy for fetal anomalies brings no relief to the mother involved and may possibly bring harm. 

The mother of an affected child is losing a baby regardless of whether she interrupts her pregnancy or not. By insinuating that termination is some type of cure you are also defining her child as a sickness. It removes the humanity inherent in her baby- well, it removes the humanity of the baby for everyone except for her. Because for her this will always be her baby. 

Medicalizing and throwing the situation into the political pool won't bring her baby back- neither will condemning her. 

We can do better than this for women. 

Giving women information about continuing a pregnancy after an adverse diagnosis is pro-woman.

Most of our emotion response to exception laws are based on the issue of "force". While most people understand that interrupting a pregnancy under these  circumstances is traumatic we assume that continuing a pregnancy under these circumstances must be even more traumatic. Termination is seen as a necessary evil- the lesser of two terrible outcomes.

The idea that "forcing someone to carry to term a pregnancy with a poor diagnosis" is somehow damaging is false- 

Receiving a poor diagnosis during pregnancy is damaging. 

Period.

With either post-diagnosis decision the risks of PTSD and severe depression are heightened. 

Because of the relatively recent advent of perinatal hospice programs, there are fewer studies of what the outcomes of continuing these pregnancies are. 

The studies that are coming in, though, are quite telling. They solidify the idea that continuing a pregnancy poses no additional risk for a mother who chooses to do so. In fact- they are routinely showing the opposite. That mothers who continue their pregnancies are faring better, emotionally speaking.


There is no denying that the mother who chooses to continue her pregnancy after receiving a poor diagnosis is at risk for a myriad number of psychological issues. Management of this type of pregnancy requires a completely different and new set of standards. (13) 

There is no claim here that any mother who chooses to continue her pregnancy will not suffer grief to the degree that a woman who terminates her pregnancy does. However, carrying to term is indeed making a positive difference in women's lives. Studies show that as perinatal hospice programs grow in number, families who make the choice to continue their pregnancies fare better. (14)

And as programs grow and more parents are educated about the numerous options available to them, early estimates show that 80-87% will make the choice to continue their pregnancy. (15) 

Once the perinatal hospice model has been explained, and more often, once a physician has addressed the issues involved with fetal pain parents are left to do what comes naturally to them.

Parent their children.

Create a safe space for them.

Make memories. 

(And make no mistake, while pro-choice advocates will claim that families are given all options, the options given are slanted to make termination seem like the only option. I wander through the rooms of post-loss carry to term moms. The pressure to terminate is enormous.) 

The after- affects of continuing the pregnancy are beginning to show promise as well- with parents stating clearly that continuing their pregnancy was a positive experience. (16)


In closing, all indications show that in the future we will begin to see more evidence that continuing a pregnancy in which a poor diagnosis has been received is a move in a positive direction for women. 

In addition, trends seem to indicate that as more perinatal hospice programs become available, more families will willingly choose to continue their pregnancies. 

It is important that those who are interested in the "pro-life" cause continue to grow in their understanding of what "fetal anomaly" exceptions in laws entail, in terms of the mental health of the mother involved, as well as the fetus.

We must begin looking past the emotional responses that we all have to this subject, and see what study after study shows- that termination for medical reasons (TFMR) is not the compassionate choice that we believe it to be. 

We must understand that woman-centered care necessarily involves a perinatal hospice dynamic in place of terminations, so that a woman carrying an affected baby can be encouraged to continue her pregnancy to it's fruition. 

Perinatal hospice is based on available science-based medicine, not solely an emotional attachment or religious conviction.

As a mother who chose to continue a pregnancy in which a lethal anomaly was diagnosed, and who was pressured to terminate throughout, I can say with conviction that having knowledge of perinatal hospice before the end of my own pregnancy would have resulted in a better outcome, emotionally. As it was, for the majority of my pregnancy I received absolutely no support. I assumed that women always terminated these types of pregnancies. 

I believed that I was an anomaly myself.

We can do better than this for women.






(1) Seller M, Barnes C, Ross S, Barby T, Cowmeadow P. Grief and mid-trimester fetal loss. Prenatal Diagnosis 1993;13:341-348, p. 344.
(6) Kolker, op. cit; Iles S, Gath D. Psychiatric outcome of termination of pregnancy for foetal abnormality. Psychological Medicine 1993 May;232:407-13, p. 407.17. Blumberg, op. cit.



(8) Lorenzen J, Holzgreve W. Helping parents to grieve after second trimester termination of pregnancy for fetopathic reasons. Fetal Diagnosis and Therapy 1995 May-June;10(3):147-56, p. 154.; Kolker, op. cit.; and Seller, op. cit.15. Lorenzen, op. cit.

(9) Donnai P, Charles N, Harris R. Attitudes of patients after “genetic” termination of pregnancy. British Medical Journal 1981;282:621-622, p. 622.

(10) Rayburn WF, Laferla JJ. Mid-gestational abortion for medical or genetic indications. Clinics in Obstetrics and Gynaecology 1986:13-71-82, p. 72; Rothman, op. cit, p. 1194; and Blumberg BD, Golbus MS, Hanson KH. The psychological sequelae of abortion performed for a genetic indication. American Journal of Obstetrics and Gynecology 1975;122:799-808, p. 806.

(11) Drake H, Reid M, Marteau T. Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clinical Genetics 1996 March;49(3):134-40, p. 139.

(12) Feitshans IL. Legislating to preserve women’s autonomy during pregnancy. Medical Law (South Africa) 1995;14(5-6):397-412, p. 397.39. Mander, op. cit.

(13) Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. Chitty, LS, Barnes CA, Berry C. BMJ. 1996 Aug 24;313(7055):478-80.

(14) The Perinatal Hospice: Ploughing the Field of Natal Sorrow. Byron C. Calhoun M.D., Nathan Hoeldtke M.D. May 2000

(15) M. D’Almeida et al., Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition, J. AMER. PHYSICIANS & SURGEONS 11:52 (2006); B.C. Calhoun & N. Hoeldtke, The Perinatal Hospice: Ploughing the Field of Natal Sorrow (2005).

(16) Sumner 2001

I haven't been writing regularly here for a while. When I do write it's in fits and starts- and mostly when I have been frustrated at some aspect of normal life that intrudes on my abnormal, inner life. I feel a need to unload some emotional baggage and here is where I come to let go.

Because of social media, much of what would have been hidden family business  at one time is now out in the open. Many now choose to share their stories of child loss. While I have my own experience to draw from, I will never understand how another parent feels when they suffer loss --because as different as each individual child is, so is the grief.