May We All Heal: Part One

May is a tough month for most bereaved mothers as Mother's Day surrounds us.  It is in the stores, on our televisions, on the ads in our email and on our social media.  It is everywhere, and you can't escape it.  Some of the wonderful loss moms I have met through this journey have the pain of trying to celebrate with a living child (or children) while at the same time grieving their child (or children) in Heaven.  What a horrible balance to try to find.  Others, like me, have no living children and struggle with the pain of going through mother's day without any child to hold and where a majority of the world does not even see us as mothers.  Some mothers face the unbelievable challenge of May not only holding Mother's Day but also anniversary dates (birth dates, due dates, death dates, etc).

The "May We All Heal" project was created in 2015 by the Grieving Parents Support Network as a way to actively focus on healing during the month of May.   There is a prompt for each day to focus on an you can write, draw, or do anything creative to respond to the prompt.  You are encouraged to share your response if you are comfortable, as this helps combat isolation and help end the silence around child loss.  Learn more here: https://grievingparents.net/may-we-all-heal/.

I think this event is a great way to share our stories and gather support, as well as be in community with other loss parents.  Last year I participated by posting on Facebook, but became very overwhelmed by posting daily, as the prompts bring up a lot of emotions.  This year I am participating by, when I am able, sitting down and answering several of the prompts at a time.  I think this will help me the most.  As tomorrow is International Bereaved Mother's Day, I thought it was a good night to start.

May 1st: At the Beginning

When I think of the beginning of my journey with Mira, all I think of is innocence.  I was aware that miscarriages, birth defects, stillbirth, and infant death happened.  I had no idea how common they were.  I had no idea the pain that a mother suffers if she goes through them.  I was certainly empathetic, I assumed it was the worst pain in the world.  But I really didn't have a clue.  I finally got my positive pregnancy test in May 2017, after hoping for it for 9 months.  Nine months is fairly average for trying to conceive your first child, but oh my, it felt like forever.  The joy I felt at the positive test is unexplainable.  I thought the hard part was over.  I mean I was perfectly aware of the fact that childbirth and raising a child would be very challenging and difficult, but the fear of not being able to have a child was gone!  There was so much relief.  In fact, I often think of a conversation I had with a friend before Joe and I starting trying to have a child.  She was telling me about her sister who was struggling with infertility and I, of course, said I would be praying for her.  I empathized deeply, not being able to have children was always one of me fears.  I was healthy and there was no indication there would be a problem, but I wanted to be a mother SO badly, that I had an underlying fear of it not happening.  I remember saying, "I am so sorry for what your sister is going through, I honestly don't think I could handle it if I struggled to get pregnant."  Oh, how ironic.  I never thought to fear my child dying! Everyone thinks that could never happen to them.

That innocence is gone now.  So very gone.  I have had to face that and accept it more than ever that last few months.  With the time here that Joe and I, medically, could chose to try to have another child, the fear that we could lose another child is huge.  Thinking about having another baby is now longer a beautiful dream, it is full of fear and unknowns.  If we do have another child, the positive test will mean joy of course, but also crippling fear.  I struggle with this fear when others are pregnant as well.  Other's pregnancy announcements are very difficult for me.  Most people probably assume it is because I am jealous, but I can honestly say that is not true.  I don't feel jealous of others when they are pregnant.  That is a common, and perfectly understandable, reaction of many loss moms, it just doesn't happen to be one of my struggles (though I have many of my own!).  No, I struggle with hearing/seeing pregnancy announcements, especial from those I know well, because I am TERRIFIED for them.  I know what can go wrong.  I know my own story and hundreds of other loss mom's stories.  When I see groups of pregnant women of certain numbers, I am so conscious statistically likelihood that one of them will lose their child.  I don't want my friend to know this pain.  I am terrified they may.   So when I hear a pregnancy announcement, I hear that my friend to open to facing this pain, and I am scared for them.  I have to actively work to make sure I don't start spilling out statistics and facts about child loss to help try to "save" them. 

So at the beginning, it was good.  It was joyous.  Mostly, it was innocence that has forever changed.

May 2nd: Life & Death

Mira's life outside of my womb totaled 53 minutes.  Her death came quietly and peacefully.  It all happened on December 18, 2017.   I have written out my birth story before, and covered all the amazing and heart breaking parts of the day.  The most surreal part of carrying a child to term with a fatal diagnosis (in my opinion) is that you are preparing for their life and death at the same time.  This is so utterly unique in a completely heartbreaking way.  I planned to her hospital outfit for pictures like any other mom, but also planned her outfit for cremation.  I called HR to set up a maternity leave and asked about the possibility of adding my unborn child to my life insurance at the same time to attempt to find ways to cover funeral expenses. (You can't by the way, the child must be discharge for the hospital alive to go on life insurance, which is why the cost of infant funerals are such a problem for families, especially considering no one wants to think about money during such a tragedy.  This often leads to parents having to chose to have their child buried at the hospital or in group infant burials with no tombstone.  Which is whole different kind of tragedy, but I'll save that speech for another time.)

Life and death are always tied together, but you realize it so much more deeply when the count down to your child's birth is also the count down to their death.

May 3rd: Responsibility 

What was responsible for Mira's death?  I don't know. I hate that, but I don't know.  I know it was severe hydrocephalus, and spinal cord defects, and a hole in her heart, and polycystic kidneys and on and on and on.  But no one can tell us what was responsible for all those anomalies.  We have been assured time and time again that nothing I did during and before pregnancy could have caused or prevented any of these issues.  All the extensive testing came back fine.  No genes found to blame.  So what was responsible?  I don't know.  That means I don't get to give the thing that took my daughter from me a name.  I HATE that.  I want a name.  I want an awareness ribbon and research in the name of the cause.  But I do not get that.  I also do not have a way to prevent it from happening again or a way to know how likely it is to happen again.  When there is no responsibility to be given, where do you go from there?  Well for me, it is staying in contact with both our genetic counselors who patiently answer all my questions help me understand the research and talk me back down when someone, thinking they are smarter than my doctors, tells me "folate is the answer" or "it is this brand, no this brand, no this brand of prenatals you must take."  It is leaning into the vague hope you are given that it is "unlikely" this could happen again, even though there are so, so, so many other things that could go wrong.  How do you take responsibility for the safety of a child in your womb when so much it out of your control?

May 4th: Me - You

Oh, my sweet Mira, she looked so much like me.  She really did!  I think we would have been alike. She loved when I read, and she loved when I played music, my two favorite things.  She loved the puppy laying on her.  She was stubborn (which I think anyone will probably accuse me of being as well!) for all the ultrasound techs.  She slept in my womb with her little hand next to her face, as I always do.  Me and you would have been so close my sweet girl.  Me and you would have had such a beautiful life together.

Both Parts Matter

After spending the last few days pretty much doing nothing but sleeping due to a lovely virus my husband so kindly shared with me, I’m finding it difficult to sleep tonight.  Is that stage of sickness where you can’t just sleep and check out, but you don’t feel well enough to actually do a darn thing the best? With my lack of sleep and being in bed for basically 4 solid days (minus a half day Monday where I decided I was better and went to work) I’ve been thinking so much about everything that has happened and everything that has changed as a result.

My mind has wandered to all that went wrong in the last two year, from the obvious and most painful, to the less severe but still stressful.  I have said so many times that the last two years have been hard, but when I really got into listing out the things Joe and I have faced, I realized the enormity of the way things can pile up.  From our laptop, phone, and refrigerator all breaking during a time when there were no finances to spare, to Joe losing his job after missing work for CHOP appointments, to serious health concerns, to the effects of PTSD and grief in our lives and on our relationships with friends and family, it is a lot! And that is just a small snippet of the list I had running through my head.  I wasn’t thinking about this in an obsessive, “woe is me” type of way though, just a matter fact way.  It is the first time I really let myself think about everything like that all at once. 

Walk Me Home

At some point in our lives we will all encounter grief.  It may be the loss of someone that affects you for a short time and then you can move forward with life just as you once had.  It may be a loss that rocks you to your core and forever changes who you are.  Even if you are one of the lucky few who hasn’t experienced one of the losses that you will feel deep in your soul, I can guarantee you have someone in your life who has.  So, if we all will experience grief in our lives, why is it a subject that is handled so very poorly by the vast majority of us?  I don’t think it is because we are bad people, or intentionally trying to hurt others.  I think the reason comes down to three words: fear, ignorance, and self-interest.

Dear Mira...

Mira,

Momma misses you so very much.  I know you are happy and feel peace and love in Heaven.  As your mother, your happiness is what I want more than anything in the world.  I am honored to take on pain if it means you feel none.  Even though you are in such a perfect place, it still really hurts that I am not holding you.  Right now, it is almost 10:00pm.  If you were never sick, if you were still here, you would probably be asleep right now in your crib in the room that is still an office but should be a nursery.  I would sneak quietly into the room and check to make sure you were asleep.  Maybe I would lean over and kiss your sweet head, or maybe I would be too worried about waking you.  All I know is right now I would give anything to kiss your head.  I know you should not wake a one year old at 10:00 at night if they are sleeping soundly, but I would give anything to run up into that room and scoop you up into my arms to love you. 

Momma still struggles to sleep a lot of the time.  When everything is quiet and there is nothing to distract me, I have a harder time pushing away the memories of the scary times.  The time the doctors told me you were sick.  The time they told me to make decisions I did not want to.  The time they told me you could not live.  Some of the not so nice things people said during that time and since then. Mostly, the moment you stopped breathing in my arms and that long ride out of the hospital without you. I think of you every single day, constantly, just as any mother thinks of her child.  But these scary thoughts, I push away so I can function each day.  At night they are harder to stop.  Momma is working hard to get better during these times.  I pray to God, and he holds me and lets me feel a little of the peace you now live surrounded by.  That helps some.

I very rarely let myself think about what exactly life might look like if you were still here.  It just hurts too much.  Thinking just now about running up to lift you out of the crib is much more than I usually let myself think.  I miss you so very much sweet girl.  If love could have saved your life you would be here right now.  I promise I did everything I could to try to keep you here with me.  I followed all the rules in the books that tell you how to have a healthy baby.  I found the best doctors I could.  I loved you from the second I knew you were on your way.  And I would do it all again in a heartbeat, just to have had the time I did with you.  Loving you and being your mother is worth all the pain of being separated from you. 

I hope you are having fun right now.  I hope you know how much I think of you and how much I love you, but don’t feel any of the pain I do at our separation.  I live in joyful and anxious anticipation of the day we are together again.  I love you so very much!

Love Always,

Momma

Secondary Losses

A couple months ago I came across an article published on Still Standing that spoke about “secondary losses.”  I have not really thought about the term ‘secondary loss’ as it applies to Mira’s life and death, but the article explained how secondary losses are important to acknowledging in grief:

“The death of our child is termed a ‘primary loss‘. Sadly, it’s not the only loss we must endure. Many bereaved parents fail to realize that the moment our child dies, we begin to experience ‘secondary losses‘. And these, like the devastating loss of our child, must also be grieved. For those new to the term, ‘secondary losses’ refers to all the collateral damage that comes as a result of the death of a loved one. These subsequent, highly personal losses form a huge part of grief.” (Katja Faber, Still Standing, 2018)

The article went on to explain that it can be helpful to write a list of your secondary losses and then the author listed hers.  Read the article here: https://stillstandingmag.com/2018/10/11/secondary-losses-how-long-is-your-list/

This article really hit home with me.  As I have started my second year of life as a bereaved mother, I have actually been thinking about these secondary losses more and more, I just wasn’t calling them losses.  I was thinking about these things, but forcing the thoughts out of my head, thinking I should not dwell on them.  This article gave me permission to really think about everything deeply and allow myself to start to grieve the other pieces I had been having thoughts about, but refusing to acknowledge deeply.