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)

I Know the Memories Rushing Into Your Mind

There are always reminders of Mira everywhere I go.  My desk at work has her picture, a painting I made for her, and a fox from Joe.  Every room in our house very purposefully has a picture or reminder of Mira in it. Just as living children’s love, laughter, and crying fill every room of their parents’ home, Mira fills every room of ours.  My parents’ home and my in-laws’ home have pictures of Mira up.  The admin area of my office has her footprint heart hanging year-round.  It seems everywhere I go I see a fox.  Reminders of love are everywhere, and I love them.

But triggers of pain and grief are everywhere too.  I have learned to handle them fairly well when they are expected.  I can scroll through Facebook and see the pregnancy announcements, pictures of children Mira’s age and newborn baby hospital photos.  Most of the time I can handle them just fine, I know when I log on Facebook they will be there.  I know when I watch Grey’s Anatomy there will be complicated pregnancies and when I go to the movies children will be there.  Sometimes I avoid these places and things because I know it will be too much, but often I can now handle them because I know what to expect.  It is those unexpected triggers that still get me, and as we approach one year without Mira, they seem to get worse.

It is the picture of the baby and birth announcement that greeted me on the work website I had to sign up for.  It is coming home to a piece of mail telling you that even though your baby is a year old they still need DHA, so be sure to use this formula in the ad.  It is seeing the first Christmas lights of the year on a house on the way home from work and being forcefully thrown back to one year ago when I first saw the 2017 Christmas lights going up and broke down because Mira would not be alive to see Christmas. Last year Mira was alive for Thanksgiving, this year she is not.  That is a hard, awful reality I live in.  Last year I was numb and unaware of what was going on around me on Christmas, not because I was sleep deprived with a one-week old newborn, but because my daughter died in my arms one week earlier and I was in shock still. This year a laughing, screaming 1-year-old will not entertain me on Christmas morning, I will light a candle and read an urn the Christmas Story from Luke with Joe.  Though I am always perfectly aware of these realities, they hit hard when unexpected triggers pop up that I did not prepare for.  With the baby announcement in an unexpected place, the Christmas lights, and the formula mailer all in one day, I am surprised I am still standing today.

Oh, Happy Day???

In a few days we will move from October, a month marked for me by Pregnancy and Infant Loss Awareness, into November a month dedicated to Thankfulness.  This time last year our time with Mira was ticking away much too quickly and November was to be our last full month with her alive.  The idea of Thanksgiving and thankfulness really overwhelmed me.  I think mostly because I knew I had a ton in my life to be thankful for, but I also knew, if I was being honest with myself, that it was hard to feel any thankfulness when your child is so sick.  I can be crazy thankful for all the support and good doctors and more, but at the end of the day, I would rather not need any of that and have a healthy child.

This morning while I sat in church next to my husband and read the bulletin that feeling came rushing back to me.  Our church was asking everyone to send in a picture of something they were thankful for and one of the examples listed was a picture of your family.  I immediately thought that we should send in a picture of Mira, because, as parents, the thing we are most thankful for is our child.  Then I felt the overwhelmed-ness I felt last November hit me.  Yes, I am thankful for Mira, but… there is always a BUT.  I am thankful for the time I had with Mira BUT I would rather it have been much longer.  I am thankful to have been chosen to be her mother BUT I would rather have been her mother and have had her healthy.  I am thankful that we got the miracle of meeting Mira alive BUT I wish we could have had the miracle of her being healed.