When the Sacred Is Torn From Your Life... And You Survive

It’s hard being back to work. It’s hard staying home all day. It’s hard when I am too busy fully focus on Mira. It’s hard when I have nothing to do but sit and think of her. It’s hard to be around people. It’s hard to be alone. It’s hard to get out of bed. It’s hard to keep breathing.

For eight weeks my entire day could consist of grieving Mira. It was hard to do that, but it has been very difficult to return to work as well. I can no longer drop everything to sit with my memories of her and cry whenever it strikes me. I am happy to be back with my coworkers that I love, back to a job I truly enjoy, and back in a consistent routine. But, when I return home at the end of the day, I am so emotionally exhausted. It feels that have a full day of grieving to fit into the few hours between getting home and going to bed.

We Keep This Love in a Photograph

When you are grieving there are so many moments that hit you in a way you don't expect.  I have been making a scrapbook of Mira's time with us.  I started it while I was pregnant, but did not really work on it until that last several weeks while I have been off work.  I had been doing a few pages a day, but this last week as I got nearer to finishing the book I have not been able to do hardly anything but work on it.  As I created pages about the last days of my pregnancy, Mira's birth, the time in the hospital after, and of her memorial, I relived every moment.  I cried because I lost her.  I smiled because I remembered her sweet life.  It hurt.  It was therapeutic.  It was heartbreaking.

Then I finished.  I expected to feel happy and proud, the feelings of an accomplished goal.  I didn't.  I am glad have a book documenting Mira's life and I will treasure it, as it contains every moment of her life.  But that is just it.  It contains every moment of her life.  There will be no more.  There is one book, one book that didn't even need to have additional pages purchased for it, that contains every moment of my daughter's life.  That is not fair.  That is not how it is supposed to be.  There should be dozens and dozens of books.  There should be endless moments to document.  There should be firsts and events and holidays.  Or maybe there should be no book at all yet, because I should be too busy with a newborn to make a scrapbook.

Turn My Grief to Grace

“How are you doing?”

“Are you feeling better?"

“How are things going?”

When I see people I usually get asked something along those lines. People want updates. People check in. It is so appreciated. It is a reminder that I am not alone. It is also hard to know how to answer. Yes, I guess I am doing okay, a little better. Though I don’t like the word “better” because it just doesn’t feel right. This isn’t really “better” than anything. One of my doctors asked if the grief was “less intense.” I like that phrasing. Yes, the grief is less intense. The first three weeks or so it was like drowning, like suffocating, like a pain I’ve never known existed. It was hysterical crying I could not control. It was a deep, all consuming fear of never getting out of the darkness. It was a physical ache in my arms and my soul for the daughter I carried for eight month and held for three days. It was wanting to hide in the closet, or under the covers, all day. It was brokenness to its full extent.

My Fears Are Drowned in Perfect Love

It has been three weeks since I said hello and goodbye to my daughter.  This morning I woke up at 4 a.m. and spent the majority of my day finding things to do to stay busy.  I did chores, organized closets, worked on projects, continued obsessing over making Mira’s area in our home perfect... until I was finally just too exhausted, and had to sit and be with my pain and memories of Mira.  Over the past few days, I am not really sure anymore if it is harder to push away the pain of missing her and busy myself and let the numbness take over, or if it is harder to give in and feel it all.  Maybe it is about finding a way to balance the two.

There is so much pain in this loss.  I miss Mira at a deeper level that I knew was humanly possible.  There is the pain of her not being in my arms, a physical ache for the child I should be holding.  There is the pain of doubt that sneaks in when I read stories of miracle babies currently at CHOP doing better than ever expected.  Did we make all the right choices?  My logical mind tells me she is not those babies, she did not have the same medical issues.  You saw the scans, logic tells me, her brain was too compromised, barely visible, all her organs were affected. But then fear whispers, “Maybe those other parents just tried harder, if you fought harder, maybe she would still be here.”  I know that is not true, but fear does not always listen to logic and facts.  Fear and doubt work together to try to tell your soul, “maybe you did not have enough faith, miracles come to those with faith.”  I shout back at the doubt, “I DID get a miracle, and she was perfect.”  I tell my doubts and fears to my husband and God and hear their gentle assurances that nothing was done wrong. And I try to make myself believe them.

I seem to move from numbness to sadness to guilt to joy (at having met Mira) back to numbness a dozen times a day.  The books say its normal, it is your mind protecting itself. The books say it is okay, and healthy, to sit in the rocking chair with a bear to hold.  The books say it okay to feel crazy, you aren’t.  The books say to not feel guilty if you feel normal or happy for a moment.  The books say it will get better someday.  The books say you will get through this.  I try to believe the books too.  The books once told me that if I followed their rules I would have a happy, healthy baby.  But this time I hope the books are right.

After letting myself feel numb today and staying busy, I finally broken down and sat in my rocking chair, listened to my Mira songs and cried.  As Joe tried to help me I told him, “I just need to feel sad for awhile.”  And I did.  I felt the full weight of it all after shoving the pain away all day.  I needed to remember everything.

I remember feeling Mira’s kicks and wiggles as she grew safe inside me.
I remember asking desperately to see her the second she was born.
I remember the weight of her in my arms.
I remember her sweet, perfect scent.
I remember how soft her cute cheeks were.
I remember how her arm moved up right in front of her face just before she left us.
I remember how her fingers curled around mine.
I remember how worth it these memories are.  Worth every second of pain.
I remember how full of love I am for Mira.

If you were here beside me…

If the curve of you was curved on me

I'd tell you that I loved you, before I even knew you…

If you were here beside me…

In the arms you said you'd never leave

I'd tell you that it's simple and it was only ever thus

There is nowhere else that I belong

Come on, come out, come here, come here

The lone neon lights and the ache of the ocean,

And the fire that was starting to spark

I miss it all from the love to the lightning

And the lack of it snaps me in two

Just give me a sign, there's an end with a beginning

To the quiet chaos driving me mad

(New York, Snow Patrol)

Yesterday, at church, I heard about the difference between seeing with eyes of fear and seeing with eyes of faith.  When I look at my daughter’s passing with eyes of fear, I worry and think about all the “what ifs.”  What if Heaven is not as wonderful as they say?  What if she does not know us once she is there?  What if she does not know how much I love her?  What if she grows up without me?  What if she doesn't grow up in Heaven, is that fair?  And the worst what if of all… the one we aren’t supposed to admit ever crept in our mind for even a second, what if we are wrong, what if Heaven isn’t there at all?

But when I see Mira’s life and passing, and my life, through eyes of faith, I remember doubts are okay, God can handle our questions.  I remember that to think “what if” is human but that I know the truth.  God is caring for Mira.  God is good.  Heaven is full of joy, even if I don’t know for sure exactly what it looks like, even if I don’t know if Mira is a baby, if she grows up, if she waits for me, or something else entirely.  With my eyes of faith I see all the promises God fulfilled for me.  All the prayers He answered.  Mira was born alive.  A child with significant anomalies in all her major organs, was born alive.  She reacted to sound, she opened her eyes, she made sounds, she was fully here with her parents.  God gave me peace the day she was born in order to enjoy her presence. I felt His presence as physically as I felt her in my arms.  God is real.  God’s Word is true.  I will look on my memories of Mira with eyes of faith.  When fear tries to take over, I will not feel guilty, I will keep trying and know God loves me just the same.

I love you Mira.  Always, every minute, for all of eternity.

From my mothers womb

You have chosen me

Love has called my name

I've been born again, into your family

Your blood flows through my veins

I'm no longer a slave to fear

I am a child of God

I'm no longer a slave to fear

I am a child of God

I'm no longer a slave to fear

I am a child of God

I'm no longer a slave to fear

I am a child of God

I am surrounded by the arms of the Father

I am surrounded by songs of deliverance

We'll be liberated from our bondage

We're the sons and the daughters

Let us sing our freedom

You split the sea

So I could walk right through it

All my fears were drowned in perfect love

You rescued me

So I could stand and sing

I am a child of God

(No Longer Slaves, Bethel Music)

Come On Baby With Me, We're Gonna Fly Away From Here

I’ve been wanting to write something for a few days now, but it seems impossible to put any words to what has happened and how I have felt over the past week.   As you are probably aware by now, Miriam Jordan Ferrara was born on Monday, December 18^th 2017 at 11:01 am.  Mira was with us for 53 minutes before she passed, peacefully and without any pain or suffering.   From the time that Joe and I first found out the extent of Mira’s diagnosis and the fatal prognosis, we have had one goal:  Ensure Mira’s life is celebrated and that she experiences only love, no pain.  With the team at CHOP and the support of those around us, we were able to see the goal met. 

 Mira was born via C-section, for my safety and hers.  Joe was with me and held my hand and helped me stay calm as the surgeon first drained some fluid from Mira’s sweet head (in order to safely deliver her) and then as she was born.   After being suctioned and quickly checked she was handed over to Joe, who held her next to my face for the remainder of the surgery.  We were amazed to hear her “coo” four times, including during her baptism and when I asked her “Do you recognize our voices?”  Joe felt her wiggle in his arms and move her arms.  She opened her eye to look at us.  As soon as my surgery was complete, Joe laid Mira in my arms and we were taken back to our room. 

During the surgery and on the way back to our room, I told Mira, “I love you” countless times.  I couldn’t stop saying how beautiful she was.  And she really was just so beautiful.  She had dark brown eyes and curly dark brown hair.  Lots of hair!  Her sweet hands and feet looked so tiny and perfect.   As my bed was pushed back to our room I put my finger in Mira’s hand and her perfect fingers grabbed mine.  Shortly after arriving back to our room, I felt that Mira was gone, and the doctor checked and confirmed that her heart had stopped.  I cried and demanded more time, just a little more time.  But I had got more than I thought I would, and I experienced more with her than I dreamed possible. 

What if I really thought some miracle would see us through?
What if the miracle was even getting one moment with you?
(Ronan, Taylor Swift)

Even after passing, Mira was still beautiful.  CHOP encourages parents to keep their baby with them until discharge or until they feel ready to release their child.  Joe and I were not sure how long we would have  her with us, as we logically knew she was gone and thought we may feel uncomfortable.  However, we did chose to keep Mira with us until I was discharge late Wednesday afternoon, and I would encourage any family facing this decision to do the same.  It did not feel strange or uncomfortable at all. We were able to hold her and make molds her hands and feet, read to her, sing to her, talk to her and so much more.  God gave us peace while she was born, as she passed, and even after we held her and loved her for 3 days.  I prayed that we would not see her body change, and that prayer was answered.  Mira looked just as beautiful when we released her to the staff. 

It may sound strange to keep your baby with you after they have gone to be with God, but it was incredible to be able to do.  And really, it is a new practice to remove a body right after death.  In the past, and still in many cultures today, the body stays with the family until burial.  I am so happy that CHOP allowed us to have Mira with us through our stay.  The best 53 minutes of my life occurred while she lived, but those days after while I held her and talked to her, and God let me feel her presence so strongly, were wonderful as well. 

Releasing Mira’s body and leaving the hospital was the hardest thing I had done in my life to that point. Leaving a maternity/delivery unit without a baby in your arms is an unspeakable pain that no one can understand unless they have done it themselves.  And, unfortunately, I know some of you reading have.  In the days since leaving CHOP, I have found that each day getting out of bed and moving through the day seems to be the new hardest thing I have ever done.  I look at her pictures over and over each day and remember her perfect face and the love I felt for her and from her.  I feel such joy to get to be Mira’s mother, but such pain from missing her.  

I have been told that someday, months or years from now, I will feel more joy than pain.  That after time passes,  the grief won’t feel so heavy, it will be there, but lighter.  Right now, I can’t imagine that.  I pain from missing Miriam is all consuming.  Every task, each problem that arises, feels overwhelming to face.  It takes every ounce of my strength to keep breathing.  The feeling of emptiness from no longer having Mira safe inside my body, but not having her in my arms either, is crushing.   As my body changes, seemingly unaware that there is no newborn to care for, my heart breaks.   I have no newborn to nourish with my milk, no child to wake for in the middle of the night.  There is no baby here for me to protect, as my hormones change and give me that instinct, I can only watch over her memory items and make sure they are safe.

I am getting through these early days of pain with the help of my family, friends, and husband.  Despite the immense grief my family and Joe are suffering, they have found strength to be there for me.  I do my best to find strength to comfort Joe, as he feels this loss just as strongly, but still works so hard to take care of me before himself.

Please continue to pray for Joe and I, and our families.  It is so hard to not get lost in this pain and give in to hopelessness and feelings that joy will never return.  Through God’s help and the support of those around us, I trust we will be able to honor our daughter’s life by continuing to breathe each day and share her story the rest of our lives.

I remember the drive home
When the blind hope
Turned to crying and screaming ‘Why?’
Flowers pile up in the worst way
No one knows what to say
About a beautiful [girl] who died…
Come on baby with me, we’re gonna fly away from here
Out of this curtained room and this hospital grey,
We’ll just disappear
Come one baby with me, we’re gonna fly away from here.
(Ronan, Taylor Swift)