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.

Forever Changed

One year, one month, and sixteen days. 

That is how long it has been since I first and last felt my daughter grab my finger.  So very long. So very very long without her.  Medically, Mira was so very imperfect.  She had abnormalities in her kidneys, stomach, umbilical cord, heart, brain, lungs and more.  She had no ears.  Her eyes were not symmetrical.  But oh, my, was my little girl perfect anyway.  She managed to react to sound without her ears.  She had the softest skin I have ever felt.  Her grip on my finger felt so strong even though they said she was so weak.  Her cheeks were round and chubby.  Her clubbed feet were so adorable and tiny.  She filled those around her with so much love.

One year, one month, and sixteen days.

That is how long I have missed my girl.  That is how long I have spent learning how to breathe without my perfectly loved baby.  It’s a long to time to miss her, but it turns out not long enough to learn to get by without her.  I read all the infant loss books (I mean ALL of them), I know they say it take much longer than a year to be able to say you are healing.  But, it sometimes feels so damn overwhelming that over a year later, the pain still knocks me all the way down some nights. 

Birthdays and Holidays

For days now, I have felt like I have so much to say that I want to write something but taking the words from my mind and typing them out just seems impossible.  I should have a 1-year old daughter.  We had a beautiful party to celebrate her life that brought Joe and I some real pure joy.  We donated 81 books to CHOP in memory of Mira and felt so proud to have our girl’s legacy be honored. Joe and I just opened gifts we carefully selected for each other.  We loved our gifts and the love and thought behind them.  But, what we really wanted was to have a beautiful 1 year, 1 week old little girl to show how to open presents.  To watch her start to understand the magic of Christmas and giving.  We will read the Christmas story from Luke to Mira tonight as we light her candle, but I wish instead I had taken her to church on Sunday to hear the story, even though she would be too young to understand. 

Over the last year, I have tried to be honest about my journey with Mira and grieving her loss, but there is no real way to put words to the stabbing, drowning, pain of grieving your child.  Last Christmas, I was home from the hospital for 5 days and it was exactly one week out from Mira’s birth and death.  I barely remember it to be honest.  I remember sitting.  Sitting on the couch.  Sitting in the basement.  Sitting at the table.  All with a bear in my arms and a blank look on my face as I tried to keep up with what was happening around me.  I remember very little of that first month home.  I was a zombie, numb and in shock.  I remember talking to people who stopped by or family that stayed over or taking a shower or other daily activities, but not really being sure what I was doing or saying.  I remember clinging to the bear, desperate to survive, but not sure why I was bothering.

This Christmas looks more like, forced smiles and jokes.  Joe and I’s usual picking on each other and sarcasm, as we try to push through.  It looks like finding some true happiness in giving my husband a gift and getting something from him that shows how well he knows me.  It looks like trying not to cry when the gifts are done, because there should be so, so much more.  It looks like finding a way to smile and laugh so I can facetime my brother, but then falling into bed (with a bear again) and not finding the will to get up for quite some time.  Last Christmas was pain, but more so numbness and shock.  This Christmas is desperately trying to find some joy while feeling the pain of being a world away for the person I most want to share in the magic with. 

Tell Him I Might Need A Hand

It has been almost a year since I gave birth to Mira and watched her take her last breath.  That does not feel like it is possible.  How could a whole year have passed since I last held my daughter?  Those of you reading this that have lost a child are familiar with this surreal feeling.  Those of you that last held or spoke to your child minutes, hours, or even days ago probably cannot even envision what it would be like to go a full year without them.  I hope you never fully understand this feeling.

This last year has been hell, to be quite honest.  Parts of it have been worse then others, and I’ve tried to talk about those parts as Joe and I have walked this journey.  These last few weeks have certainly been some of those “worse” parts.  I think most bereaved parents agree that the hardest times of the year are anniversary dates (birthday, date of death, etc.) and Christmas time.  I don’t know if it is better that I am hit with both at once (with Mira’s date of birth and death being exactly one week before Christmas) so I don’t have two overwhelming times of the year, or worse because Christmas is that much darker for me.  I can’t answer for sure, because I have not experienced it any other way, but I can say it certainly sucks. 

I have been thinking over the last day or two about some things I have learned along this grief journey that I want to write out. Some things I learned right away, but most took many, many months to learn.  Most I wish I never would have had to learn, some lessons I am grateful for though, despite the fact that I would trade all the lessons in the world to have my sweet girl back.

I have learned that joy and sorrow are not black and white.  They are not polar opposites that cannot exist together.  The joy of loving my daughter and the sorrow of missing her live side-by-side in my heart every day.

I have learned that letting go of pain does not meaning letting go of love.  When an entire relationship has been full of love and pain tangled together, it feels like if you let one go, you will lose the other.  Even if logically you know this idea is false, it is so hard to feel in your heart.  The pain may always be there, but as I slowly, slowly, let it shrink back, the love grows to take its place. 

Unfortunately, I have also learned that the pain will always be there. I may only be one year into the life of a loss mom, but I have the great fortune of being a part of a network of loss mothers who share their wisdom.  And I know the pain never fully ceases, but does become bearable as the years pass and as you commit to doing the work of grief.

And, yes, grief is work, I have learned.  Very hard work.  It is not sitting and waiting for time to pass and feel better.  It is actively working through the pain and finding the desire to heal when you just want to give up.  It is being honest when people hurt you and trying to teach them how to help the beavered.  It is giving up time and money to attend counseling and lay all the darkness out in the open and ask for help. 

I have learned that even after doing your best to tell people that you just don’t have it in you to be the one who reaches out while grieving, some people, actually most people, will still say, “call me and let me know if you need something.”  Or, “Tell me what you need.”  Or, “I’ll wait to hear from you.”  They say them because they are nice things to say and grief makes them uncomfortable.  I have learned who I can depend on to just tell, “things are bad and I need you” and they will be there.  I have learned to feel unending thankfulness towards them instead of guilt for needing them.

I have many more lessons to learn and I am sure I will have to learn some of these over and over again.  I miss Mira with every cell of my body.  The wondering about if, at one year old, she would be walking yet, wondering what her first word would be and when it would be, and wondering who she would be plague me daily.  Hearing updates about children near her age strangely fascinate me and feel like a knife in my heart at the same time.  I will keep pushing through this healing journey to honor my daughter, but I think the next few weeks will be survival mode.  And I have learned that survival mode is okay sometimes.

I'll see you on the other side

If I make it

And it might be a long hard ride

But I'm going to take it

Sometimes it seems that I don't have a prayer

Let the weather take me anywhere

But I know that I want to go

Where the streets are gold

'Cause you'll be there

So if you're up there watching me, would you talk to God and say,

Tell Him I might need a hand to see you both someday

(George Straight)