October- Pregnancy and Infant Loss Awareness Month

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October has been designated as pregnancy and infant loss awareness month. In 1988 Ronald Reagan designated October as pregnancy and infant loss awareness month to acknowledge the lives of these babies and the grief that these families face which very often is not acknowledged and since there have been many initiatives.

On October 15th at 7:00 pm individuals from several countries around the world light a candle in remembrance of these lives that were lost so soon in an effort to create a wave of light across the globe.

It is no doubt that the loss of a baby through miscarriage, infant death or stillbirth is a traumatic experience for couples. These types of losses are often not fully understood by the couple as they are sudden and many times there is no clear cause. Often times these losses and the complicated feelings the couple have are misunderstood by people that they encounter in their lives as well. Most people can understand and empathize with losses of older children or adults because there is a person that you had a relationship with that you had to say goodbye to. This we are prepared for as our elders model this for us in society. Perinatal loss is less discussed and difficult to process.

When a couple loses a child through miscarriage, which is a lost pregnancy prior to 20 weeks in duration, stillbirth or infant loss the experience of grief is inevitable. Thankfully in more recent years these children are beginning to be acknowledged and ceremonies to honor their life are available for couples to have closure.

Studies show that couples that lose a child often experience anxiety, depression, PTSD, complicated grief and feelings of isolation. These symptoms can be minimized some in cases where there is understanding within the couple’s relationship, supportive family and friends, formal counseling or a support group.  Time and time again the isolation that these individuals feel is the thing that comes up in conversation and in my own experience.

The trick to the isolation that comes with perinatal loss is that at times individuals choose to isolate and manage the emotional stress in a safer place and without needing to explain all of the feelings that they are struggling with.  These feelings can feel so heavy and in many ways do not always have words.  Child loss can bring people to the very core of their being.  Sometimes taking a break from the public and seeing families with children running around just makes the pain worse.  In these times I often advise clients, and even found myself, that knowing what you need in any given moment and giving yourself permission to do so creates a space for healing and allowing for rest physically, emotionally and even spiritually.  I would call this self care, and self awareness.

Moments where the isolation is about being different or feeling misunderstood are the toughest moments.  It all starts out as a typical loss, people say the same things that they say when a person loses their parent or friend.  Empathy abounds.  Then after a couple of weeks, everyone else has moved on and many times feel the need to question why the individuals have not.  This is sadly typical in some other types of losses as well I am certain, however  our topic is perinatal loss.   Often this lack of understanding creates a type of isolation that is not productive to healing.  One way to help is to educate people that do not have the experience so that they may choose to be more supportive.

So here is why We (collectively) haven’t “moved on”:

  • We have been planning and practicing to grow up and parent since we were old enough to hold a baby doll (3 or 4 years old).
  • When we heard the news that we were pregnant we saw a whole life before us that included future plans and it ended abruptly without warning.  We had no plan for this.
  • We have been trying for 5 years to become pregnant and we are getting older and worried that this was our last chance to be parents. (In cases of infertility)
  • We love the baby that we have never met or met only for a short number of hours or days and it seems so unfair that we don’t know much about him (her).
  • Our siblings and friends are all having babies together and we cannot share in the joy and the future play dates.

Of course there are many more reasons, but the main point is that if you, a friend or a loved one are feeling isolated after child loss due to miscarriage, stillbirth or infant loss there are things that can help. Grief groups are a great start if you are finding little understanding or don’t feel comfortable talking to anyone in your immediate circle.  If the group idea does not appeal to you, seek professional support from a counselor that has experience with grief and loss or infertility and child loss.  There are people in the world that understand even via online support that can be found on the resolve.org website.  There are also several others out there and I will have one here soon.   Will keep you posted on that.

So, when you light your candle for your little one(s) lost too soon on Oct. 15th at 7pm, remember that you are not alone in this celebration of your angel(s).  You are joining families across the globe.  It is my sincere wish that you experience peace, hope and belonging.

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~Penny Lupo, author

embracinghealing.com

 

A Place to Grieve

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Twenty two years ago today on 9/12/97, the third and final miscarriage  we would endure occurred.  This was also the most devastating for me as we were nearing the end of the road in resources and emotional energy to continue trying.    In 1997, I had no idea that I could go to a church and ask for a ceremony to honor my longest pregnancy of 9 weeks.  I was a very different person back then and did not ask such questions.  I dare say it was hard then to even know if it was okay to acknowledge this as a real loss.  It all felt so very surreal.

Most people said they were sorry or said nothing and distanced for a period of time as if we were infected with some horrible disease.  Family members that called to check in during the first losses didn’t this time.  I think they just didn’t know what to say.  It felt as though our world fell silent.   This was a way of life now.  We were now in the world of multiple miscarriages.   We were stuck in a stigma that would not relent.  We were hanging on by a thread at this point and we had been doing this for more than 6 years.  It was getting old and honestly I remember in the same way others distanced from us, I wanted that too.  I wanted to be anyone but me and prayed everyday that either we have a child or it stopped mattering at all so that I could get unstuck from this hell that was created by something so seemingly simple as having a family.

When a loved one dies we bury them in a cemetery or have ashes in a special container that allows us to pay our respects and maybe even bring flowers.  It’s a legitimate loss by societal standards.  In an early miscarriage, there is often acknowledgement in the week that it occurs and then it’s no longer discussed, and people move on.  I think in many ways there is just not an understanding when you do not have experience with miscarriages or child loss.  It is a very complicated topic and beliefs vary as to when life begins making this even more difficult to navigate societal views.  As with many difficult topics stigma and very often guilt and shame get in the way of offering or asking for support.

Here are some things I have discovered about the grief process over the last 22 years:

  • Not having a tangible loss (body to bury) is still a loss and you have permission to feel it as such.
  • Infertility alone is a loss in and of itself, it’s a loss of the imagined life that you created in your mind.
  • You and your partner will most probably grieve differently and at different times.
  • Grief changes; it ebbs and flows depending on anniversary dates and distance from the loss.
  • Not acknowledging the feelings associated with grief and loss does not take away the weight of the grief nor does it make it “go away”
  • Acknowledging grief, even when we don’t want to, can create a sense of power over the feelings associated with it and can give credence to the fact that we are grieving regardless of anyone else’s opinions.
  • Finding a tribe of others that experience similar grief can help normalize and remove isolation whether it be a support group online or in person or a professional counselor, it can make all the difference.
  • Grief is a teacher, my experience has taught me that I am stronger than I ever thought I could be, it has taught me to use caution with my words as a protection for myself and for others, it has taught me that I do in fact have faith that there is something out there bigger than us at play (for me that is God).
  • Grief can rear it’s ugly head at any given moment and it’s often when we least expect it.  Over the years, I have learned that it’s what connects me to the babies that I did not see or hold and reminds me that the long held fear that I would forget them is not even possible.
  • Acceptance of the reality of loss is difficult, and the whole ‘letting go’ thing even more threatening.  Especially when a couple continues to try to have a baby.  I cannot speak for others, but my experience has been that time makes this more manageable.  Be patient with yourself and remember that this is hard work.
  • Grief can be a part of you that moves with you in life rather than a noose around your neck that keeps you down.

We can certainly add so much more to this list and perhaps we will over time. 

      About 6 or 7 years ago I learned that in our community there was a mass at a local cemetery known as the Rachel mass. (see the picture above).  This mass was the breakthrough moment that I needed.  Finally a place to go and pray with others that lost a child or children like myself.  And many of them I recognized from church but never knew that they had this experience.  I tell you this to illustrate that the person next to you may know the very same pain, perhaps with different details.   That can help with the feelings of isolation, even if you never utter a word to the other people around you. There is a human connection that somehow can feel comforting in just a glance or handshake.  The shame involved in not carrying a child to term or losing a child can certainly not survive when you are in a group of people that are there with you honoring their very own loss.  It can be healing and very much was for me.

Having a place for you to honor and recognize an intangible loss can be a big part of the healing process.  It can be a statue in a cemetery, it can be a garden in your yard, a community garden, or a candle that you light.  Wherever this space is, take a few moments to connect with your loved one(s) as they are a part of you and your story.

And so it begins…

Where were you and what were you doing when you discovered that becoming pregnant may not be easy?  For some of you it may have been a slow process where you decided to begin trying and then over the course of months you slowly became aware that there may be a problem.  Perhaps you had other health complications that meant that this would be difficult for you. Maybe there is nothing wrong at all and it just isn’t working.  No matter how you answer this question, there is no doubt that the struggle that you entered was not one that anyone could prepare fully for.

The purpose of this blog and in my work as a Mental Health Counselor it is my hope that I can openly discuss the areas of life affected by the fertility process and help couples that have found themselves googling “infertility support” find helpful information to support them wherever they are on their personal fertility journey.  As a bonus I would also like to impart many relaxation ideas and thoughts to support you along the way.

Getting back to the original question, our answer to that question came when we were married.  I remembered my doctor mentioning that I would probably need help to get pregnant because my cycle was so irregular.  At 22 I never thought anything of it.  It was not until I was 23 and we had purchased our first home that I was bitten by the ‘mommy bug’.   It just seemed like the right next step and we were ready.  We were not prepared for the ride that we were about to embark!

This ride is filled with peaks and valleys, constant reminders to remain hopeful, diet changes, lifestyle changes, medical tests, complicated relationships, grief and loss, outcomes that were hard to swallow, challenges to our finances and work lives, our relationship and many traditions. This is just the tip of the iceberg; we haven’t even gotten to emotions!

The flip side to it all are the positive changes and occurrences that we don’t often give much floor time.  We learn more about ourselves, our partners, our strength, and our ability to adapt when things are not going as expected.  Many people say that they grow in empathy and sensitivity to others.  Some couples report growing in faith as well.  

These are all things that we will discuss and much more!

Please remember this blog, as stated in the about page, is not to be considered a replacement for mental health counseling nor is this in any way a space to manage any mental health crises.   If you find yourself in crises, dial 911 or go directly to the nearest emergency room.