May We All Heal: Part Three

May 7th: New Normal
New Normal is all about accepting that your life is different now and will never be the same.  It accepting that it will not go back to the way it was.  This has been very hard for me.  I have accepted a lot of the new normal me.  I will not look at anything the same way anymore.  I see life as more fragile and I empathize deeper with those I work with.  I am more open and honest about my feelings.  I am more willing to be vulnerable if it means helping other or spreading awareness.  I have deeper passion for the children I work with and a new found passion for those who grieve.  I am more willing, in cases where it is appropriate and needed, stand up for myself and my needs (though I working on this one still!). These are good new aspects of myself. 

However, I often long for the time when my heart did not feel so heavy and hurt so much.  I time when I didn't yet know how much some people in my life would let me down and break my heart.  A time when I was more optimistic and cheerful.  My new normal is a lot more tired and a lot more scared.  I don't like being this tired, scared person.  But living with the reality of your child being dead is exhausting.  It is like I used to start pretty much every day with my energy reserves full and ready to tackle whatever came up throughout the day.  Now 75% of those reserves go towards the grief each day, meaning I have only 25% left to tackle work, relationships, housework, errands, and everything else.  I am just so tired.  Everything is so much harder.  I am sure some people reading this that have never had the pain of losing a child, think that 75% of your energy going towards grief over a year out from the loss is either an exaggeration or a sign of unhealthy grieving, but it isn't.  The grief, the PTSD, the depression, they take a lot out of you and that doesn't change after a year, or two, or three.  Now in the first several months 99% of my energy went to grief, so there's improvement, and I know there will be more.  But it will never stop being hard.  The fear takes up so much too.  The fear of never having a child to raise.  The fear of losing another child.  The fear of having more friends/family walking away from me when I need them.  The fear is exhausting too.   New normal kinda sucks when you get down to it.

May 8th: Mother
Being a mother right now at 29 years old looks so very different than I ever imagined.  In the perfect plan for my life, I would have one or even two children in my house right now in their beds.  Children that may wake throughout the night and that I would get ready in the morning and parent the way I always planned.  Instead, I have one child in Heaven and none hear in my home.  Being a mother at 27 years old, meant fighting for my child's right to be born and have whatever moments life she could.  It meant making choices I never dreamed I would have to at 27 years old.  It meant planning a funeral.  Being a mother at 28 and 29 years old has looked like finding ways to honor my child's short life and live in a way to make her proud.  It has meant protecting her memory and furthering her legacy.  This is not what I ever imagined motherhood to look like.  The very most important basics of being a mother are loving and protecting your child though, and that, that I get to do every day.  It just looks different than I planned.

May 9th: In My Heart
This prompt just immediately made me think of the lyrics to "You'll Be In My Heart" by Phil Collins (from the Disney Tarzan movie).  I sang this song to Mira while I was pregnant, I sang it to her in the hospital over the three days that I held her still little body.

My arms will hold you,

Keep you safe and warm

This bond between us

Can't be broken

I will be here

Don't you cry

'Cause you'll be in my heart

Yes, you'll be in my heart

From this day on

Now and forever more

You'll be in my heart

No matter what they say

You'll be here in my heart

Always

Why can't they understand the way we feel

They just don't trust what they can't explain

I know we're different, but deep inside us

We're not that different at all

And you'll be in my heart

Yes you'll be in my heart

From this day on

Now and forever more

Don't listen to them

'Cause what do they know

We need each other, to have, to hold

They'll see in time, I know

When destiny calls you, you must be strong

I may not be with you

But you got to hold on

They'll see in time, I know

We'll show them together

'Cause you'll be in my heart

Believe me you'll be in my heart

I'll be there from this day on

Now and forever more

Those lyrics say all there is to say.  I love you Mira, now and forever more.

May We All Heal: Part Two

May 5th: Unexpected Losses
The expected losses are obvious.  You expect to lose your child and and every part of their childhood when your baby dies.  I wrote a post (https://babyferraram.blogspot.com/2019/03/secondary-losses) about secondary losses a couple months ago that speaks directly to the unexpected losses.  The loss that has been hitting me the hardest, over and over, as time goes on, is the loss of feeling connected to others.  People forget things that are so important to my memories of Mira and its hurts so bad, because the memories, the signs and symbols, the dates, they are all I have.  So when they are forgotten I feel on the outside again.  When everyone around me is talking about raising their children, I feel so left out.  When everyone is talking about day to day life and their problems and triumphs, I feel so far away because my life is so different. It feels as though I don't have a place to belong anymore.  I don't belong with the women who have never had a child, and I don't belong with the mothers.  I so often feel out of place and awkward, not know where my place is in the world anymore. This has been the biggest unexpected loss I have faced, and it tangles in with so many other losses.

May 6th: Unexpected Gains
My biggest unexpected gain ties directly into the feelings of being out of place that I just described.  It is hard to talk about gain when thinking about losing Mira because no gain is worth having lost her.  But I did gain a new perspective on life, a better understanding of suffering, a passion for helping those facing pregnancy and infant loss, and more.  My biggest unexpected gain though, has been the friends and support I have found in the baby loss community.  Though online support groups I have found a group of women who truly understand me, care of me, and support me, because they have been there too.  Most of these I have only spoken to online and never met in person, but it doesn't matter.  They find the right words to say when I need them.  And they share their real, raw feelings to give me a chance to support them as well.  I hope I have the right words when I am there for them.  It is a strong, tight-knit community.  It is a club no one wants to join, but I can tell you once you are in it, you are surrounded by some the of strongest love you will ever know.

I would like to catch up on the other prompts, but it has been a very long day.  I decided to write tonight to calm my mind, and it seems to have helped some since I am now so sleepy I can't keep typing.  I will get the prompts when I can, as I said early, rather than stressing myself out keeping up with the days this year, I will write as I am able.

But before I hit "post," I need to say, my sweet, sweet Mira, thank you for making me a Mom.  I listened to a song from The Greatest Showman in the car today while getting groceries and I thought of you so much, most of those songs make me think of you.  I cried as I heard the lyrics to "Never Enough" thinking about how, without you, nothing is ever enough, because you are always missing from my arms.

I'm trying to hold my breath

Let it stay this way

Can't let this moment end

You set off a dream in me

Getting louder now

Can you hear it echoing?

Take my hand

Will you share this with me?

'Cause darling without you

All the shine of a thousand spotlights

All the stars we steal from the night sky

Will never be enough

Never be enough

Towers of gold are still too little

These hands could hold the world but it'll

Never be enough

Never be enough

For me

(The Greatest Showman)

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.