The Struggle

We are going on five months since the worst day of my life. I know this is not a long time in the grand scheme of the universe, or even a lifetime. In some ways, it feels like it was just yesterday. In other ways, it seems like an eternity.

I have done a lot of "grief work," as our group leader says. In keeping with my habit of holding myself to relatively high standards, I wanted to do this "the right way," not that there is such a thing. Even in the midst of my in induction of labor, I was leafing through the books they gave me on how a mother should mourn the loss of her baby. I knew I would hold my baby, look at her, tell her she was wanted and loved. I was less sure about the photographer, but thankfully, I decided to have her pictures taken.

After delivering our beloved girl, I stayed home and recovered for a couple of weeks before facing my usual daily life. I started going to the Perinatal Loss Support group the Tuesday after I delivered. I read books about how to survive the death of your baby. I told my story via email to my colleagues at work and to my extended family and friends. I joined online message boards on pregnancy loss. I read blogs of other baby-loss mothers. I started a blog myself. I came to know and love other mothers of angels in real life. I have joined organizations and clubs with the goal of increasing awareness of our issue and developing a network of support to benefit families like ours. I have spoken out on our issue to help educate others who have not been touched by such a tragedy. I will never stop working to raise awareness of the issue of stillbirth and perinatal loss.

I created a memory box with all of the mementos from the hospital, such as her little pink knit cap, baby blanket, hand and foot prints on paper and in ceramic, discs with many photos of Angeline. I also included pictures from my ultrasounds, invitation from my baby shower, cards from baby gifts, sympathy cards, photos of floral arrangements sent. I designed an bound album of her photos, and later a "baby book" style photo album. I obtained copies of Angeline's certificate of still birth, death certificate, autopsy report.

When you lose a baby, your entire world is instantly devastated. We had enjoyed a wonderful Christmas full of excitement and anticipation. Before the New Year, we were in the depths of misery. The thing that mattered more to me than anything, ANYTHING, in the world was suddenly gone. Because in a situation like ours, you feel so out of control and vulnerable, it is natural to set your sights on small, manageable achievements and milestones. The two-week follow-up visit with the OB. The six-week visit. When the bleeding stops after the birth. The results of the pathology report. The appointment with the perinatologist. The resumption of the menstrual cycle. Surviving the due date. Being given clearance to attempt to conceive again. Living through Mother's Day with an angel baby. Seeing friends with overlapping pregnancies deliver their own healthy babies.

I thought of little gestures of thanks I wanted to extend to certain special people for what they had done to help me through this dark time. A gift for my friend who insisted on flying down from her ski vacation to place my epidural when she heard I had lost Angeline. A gift for my cousin who stayed with us through the emotionally draining labor and delivery. Small tokens of thanks to my amazing nurses on L&D. A letter commending the hospital's excellent Perinatal Loss program.

I received a number beautiful gifts meant to commemorate Angeline. A couple are particularly special to me. One is a bracelet designed for me by a very dear friend; its charms say, "Baby Girl," "Angeline our Angel." To this I added another charm sent by a different friend, which has a flower and "December" written on it. My very closest girlfriend sent me a small sculpture of a couple holding a baby with angel wings, which sits in the center of my coffee table. Another friend sent me an absolutely precious statue of a little girl with an upward gaze, holding a bird in her hands; it is entitled "Joy" by the artist who designed it. Adrian and I designed a ring with diamonds alternating with Blue Topaz (December birthstone), which I wear in my left ring finger.

All of these things are acts that serve to affirm my daughter's life and loss. The mementos and gifts are tangible reminders of Angeline. I have done these things, met these marks, surrounded myself with reminders of her existence. You are then faced with the inescapable reality: it is really OVER.

So what comes next? The truth is, I am still aching. I don't expect that I will ever truly heal in this life. I know I will carry the heaviness of this loss through the rest of my days. I have been told by some that the burden become lighter in time, that the pain is not so raw and open. I have heard from others that when a first child is lost, a subsequent child does help facilitate healing. I believe that this will be true in my case. I feel that another pregnancy resulting in a healthy baby is the only human, earthly experience that will allow me to escape this misery and have any hope or joy in life. Though we have only just started trying, so far, this has not happened. I am not pregnant and my agony is as present as ever.

Many times I will hear a song that reminds me of my grief. I have hear this song many times before, but while driving today it really spoke to me.





"Fix You"

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Today, I held a baby.

Today, I held a baby. Two, to be more accurate.

Two precious, little, beautiful girls. Newborn daughters of my good friend. I remember when I first learned that she was expecting. I was already finishing up my first trimester. We were so looking forward to "our girls" playing together! They would have been about two months apart.

They are gorgeous. One of them looks like her mommy, one like her daddy. Both their parents are totally in love with them. Today was the first that I have seen them. I held each of them for awhile. Already, they have distinct personalities. One baby seems so easy and laid back. The other makes a lot of funny faces, furrows her brow, looks like she's thinking. "What on earth could you be thinking about??" I asked her.

I am genuinely happy for my friends on the arrival of their twin girls. In some ways, I expected it would have been harder to see these little girls, but it wasn't hard at all. I thought they were beautiful and precious. I didn't really feel so much sadness for myself. I hope that one day I will have the joy of holding my own live baby in my arms, but today I had the great pleasure of holding my friend's little princesses.

International Babylost Mother's Day

Today I was so fortunate to celebrate International Babylost Mother's Day with some of the truly amazing women I have come to know in these past four months. Though in some ways we are just getting to know each other, in other ways, I feel like we have known each other for years. I believe we will share a special bond for life. I hope that in the future we will celebrate the arrival of one rainbow baby after another and think about how far we have come since first knowing each other. I feel so blessed to be in this circle of women. None of us ever dreamed we would be here, but now we are. I love the words Carly Marie wrote, "United in grief, we find love and strength." (http://internationalbabylostmothersday.blogspot.com/)

I was reminded today of some of their personal qualities, to name just a few of the many reasons why these women are so special:

Beauty inside and outside.
Spirit of generosity.
Talent for expression through art.
Honesty of experience.
Open and forthcoming.
Commitment to healing.
Solemn and serious.
Joyful laughter.
Hopeful optimism.
Faithful.

They are beautiful mothers, every one of them.

Missing you Angeline on Easter

"To Where You Are" - Josh Groban

Who can say for certain
Maybe you're still here
I feel you all around me
Your memory, so clear

Deep in the stillness
I can hear you speak
You're still an inspiration
Can it be?
That you are mine
Forever love
And you are watching over me from up above

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you're there
A breath away not far
To where you are

Are you gently sleeping
Here inside my dream
And isn't faith believing
All power can't be seen

As my heart holds you
Just one beat away
I cherish all you gave me everyday
'Cause you are my
Forever love
Watching me from up above

And I believe
That angels breathe
And that love will live on and never leave

Fly me up
To where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you're there
A breath away not far
To where you are

I know you're there
A breath away not far
To where you are

The three month mark

Some of you have noticed I haven't posted in a few weeks.  I am not completely sure why that is, but I think I have been waiting for the inspiration to write new words.  Thoughts of new clarity, hope, healing.

We have just passed the three month mark for Angeline's loss.  There are moments where I still experience a wave of horror when it occurs to me that this really did happen.  On the other hand, I have gotten to a point where I can usually tell my story without becoming extremely emotional, without tears.  There are still tears in private sometimes, of course.  When I see parents who have experienced a very recent loss, I appreciate the progress I have made in the past several months.  Mercifully, I have the sense that time has been passing very quickly, and I am thankful for that.

I do not really subscribe to the Kubler-Ross "stages of grief" model.  Why?  Well, to start with, she developed this concept with regard to terminally ill patients confronting their own mortality, not the loss of a loved one.  Obviously, coming to terms with your own death is very different than coming to terms with your child's death (or the loss of any other loved one).  In addition, as I understand it, Kubler-Ross conceptualized these stages after interviewing a relatively small group of terminally ill individuals and these stages have not been clearly demonstrated in subsequent psychology research.  These things being said, I think anyone suffering the loss of their child does experience shock / denial, anger, bargaining, depression and acceptance.  Not necessarily in that order, nor does every individual experience every phase.

For me, the entire first month was a blur.  I don't know that I was ever in denial, per se, but I was certainly in shock.  I don't even know how I was able to get through those early days.  I went from being as happy as I have ever been in life, to the depth of misery that I had never before experienced.  It seemed so perverse, so unnatural, so horrifying.

I have experienced some anger.  I think that my anger was most apparent around the time of my due date.  It wasn't so much that I was angry at God, or angry at my fate.  I had long ago come to learn that very bad things can happen to anyone, and frequently they have done absolutely nothing to deserve it.  In this case, it happened to us.  I became angry with the insensitivity and thoughtlessness of certain people around me.  (See my previous post, "An Open Letter.")  In the past few weeks I have been letting go of those feeling a little bit. I realize that there are many people out there who simply do not have the emotional and/or intellectual capacity to begin to imagine what I have gone through.  The cannot appreciate how hurtful their words and actions may be.  Rather than being angry, I have realized that I have a few options.  One would be to educate and inform them of why these things are so offensive.  Another would be to basically write them off as people I cannot concern myself with and try to avoid them.  Both of these are reasonable options to consider on a case-by-case basis.

Bargaining.  Now that one might apply well to people confronting their own mortality.  It doesn't work so well in this scenario.  My daughter is gone, and is not coming back.  There is no way to bargain for her safe delivery into her parents' loving arms.  Any bargaining I may have done seems to have been in terms of my own recovery.  I have focused on signs of my body recovering to help motivate me to keep moving forward psychologically.  Maybe that doesn't make sense to some people, but without signs of physical recovery, I don't know if I would have made as much progress in my emotional recovery.

Some degree of depression has been a constant for me since Angeline's death.  Only another mother of loss can relate to the heartbreak I am referring to.  The constant ache.  We all know the profound sense of emptiness that comes immediately upon the death of a baby.  Being a mother was the most important thing I have ever done.  I loved my baby more than anything else in this world in my entire life.  Suddenly, she was gone, without warning.  This experience is justification for depression by just about anyone's standards.  The intensity of depression waxes and wanes.  Early on, it was hard to even get out of bed at times.  Later, waves of deep sadness would crash over me.  As time is moving on, I do continue to experience these feelings of emptiness and sadness, but with less intensity overall.

In my mind "acceptance" does not necessarily refer to a complete sense of peace with what has happened, but just a willingness to acknowledge a new reality.  I don't think I will ever be totally at peace with the fact that my daughter had a fatal cardiac defect that took her life at 31 weeks.  However, I have come to a point where I can accept the fact that her life may have been very painful and difficult if she had lived.  I know that had Angeline been born alive, she would have required extreme measures to save her, and she may have died in spite of our best efforts.  There is one thing I do have a sense of peace with regard to, and that is that God did not put me in a position of having to make the heartbreaking decision to withdraw care on my own child.  I often think that if Angeline had been born alive, I might have eventually been put in that position so that her suffering could end.  Instead, God took her home as a beautiful angel while she was still inside of me, the only life she had ever known.  I am grateful for that, in a strange way.  So, in a sense, I do accept what has happened.  I know that it very well may have been the lesser of evils.

Three months out, I accept that we have been chosen to bear this extraordinary burden, the reasons for which I do not know.  That is the way this life is.  We don't know why we are chosen to carry such a heavy load, nor do we known why we are blessed with good fortune in other areas.

If you haven't yet seen it, consider watching the movie "The Curious Case of Benjamin Button."  It is a wonderful story of love, acceptance, forgiveness, sacrifice...  It will make you smile and make you cry.  There are so many beautiful moments in this movie.  I will quote the scene in which after years of hard living Captain Mike has come to the end of his life and says,

"You can be as mad as a mad dog at the way things went. 

You could swear, curse the fates, but when it comes to the end, 

you have to let go."