DADDY, GUEST BLOGGER: A Song of Six Days

I asked my husband to write a post recently and below is what he sent. I love him more than words...

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Once upon a time I had beautiful, tiny, brave and brown haired daughter.  The daughter who died, six days after she was born, while I was helpless to save her.  My daughter was born too early and too little, with impossibly tiny fingers and toes and still covered in downy body hair.  She had so many tubes, needles, and sensors attached to her that it was difficult to find a place on her body to touch.  All of these things made her visibly uncomfortable and she would sometimes tear at them and silently cry; her face all wrinkled and red.  It was absolute torture that I could not pick her up and comfort her, especially considering that in my mind, protecting my children is the truest definition of a father.  Eventually my wife and I found we could sooth her by stroking her hand and singing to her.  When she heard our voices we could see, in the many monitors, her heart rate rise in response and she would grab our fingers and kick her legs.  I remember with both joy and sadness the feeling of her little hand grasping my finger, of her little silent cries and furrowed brow, how we could ease those cries by singing.

Six days.  That is all the time I had with her.  I should have spent every moment at her side.  Instead I remember spending endless torturous moments looking for parking spaces, running errands, paying bills, all in the hope that we could all travel to Washington D.C. where she could get the best care available.

If I knew then, what I know now, I would have spent every moment at her side singing to ease her pain. I would have sung her a song of the endless love of fathers for daughters; a song about the joyful electricity in holding her small perfect hand; a song about her beautiful and passionate mommy who loves her with fierceness and longing.  I would have sung a song about her wild and uninhibited brother running fearless and covered in bruises; a song about her diverse and incredible grandparents; a song of her honorable and occasionally roguish ancestors.  I would sing a song of autumn leaves and spring rains, of rich dirt and deep water and a planet teeming with endless variations of life.  I would have sung a  song of the scents of ginger, roses, wet dogs and freshly cut grass. I would sing a song of fairy tales and myths, legends and secrets. I would sing a song of black birds, busy ants, flitting butterflies, lovely flowers, quick lizards, and crafty squirrels. A song of boo boos kissed and tears dried.  I would sing a story about a little girl standing on her daddy’s feet to learn the two-step; I would sing a story about Girl Scout cookies and Sunday dinners and eating pizza on the floor while watching movies on Friday nights.  I would sing a song of walking my beloved girl down an aisle to a groom. I would sing a song about her and me unending, while my voice became hoarse, while my hair and nails grew long, my ribs become pronounced and my eyes became blind.  I would sing a song of love so deep and so eternal that the gulfs would open beneath us and fire would light the sky.   I would sing our song until they drug me away.  If my song could have eased a single second of her pain I would have sung until the walls around us crumbled and the world fell apart.  Instead, she died and I could not sing to her, and the walls really did crumble and the world really did fall apart. 

So now our lives go on, but I sing to you silently.  Whenever I see something that moves me, or whenever your brother (and future sister) experiences something new, or whenever I feel loved, or whenever I miss you, I add to the silent song.

Where's the love (and support)?

When a woman has a miscarriage, stillbirth, or infant loss, it is understandable not to know how to react if you’ve never experienced the tragedy yourself. Even if you have experienced one, two or all three of these horrific events, it still doesn’t mean you understand what another grieving mother is going through. We all grieve differently. Some of us are external grievers while others want to internally process what has happened. I NEED to talk about what has happened. I NEED people to remember my daughter (and two miscarriages) and to just say her name: Eleanor (Ellie). I NEED people to continue to offer love, patience and support and to never assume enough time has passed for my “getting over” her unfair and untimely death.

After Ellie died I desperately searched for resources on HOW to grieve. Was I overreacting or dwelling or trying to be the center of attention as my sister said? Why couldn’t certain family members and friends help me? Why were they just being silent? How did women cope with this before me? How could I ease the pain? I was lucky to stumble across some great organizations like the Compassionate Friends and Faces of Loss, Faces of Hope as well as find books that I could relate to (I compiled them in the resources tab of this blog) and started grief counseling. But why isn’t there more support for us?

As National Pregnancy and Infant Loss Remembrance Day approaches on October 15, I find myself thinking about social norms and infant death more and more. I am proud of the community I belong to, although the membership dues are high. There is an amazing support network in place, but it still taboo for outsiders to acknowledge and support us. A study from 1978 titled, “Death of an infant: Parental Grieving and the Failure of Social Support,” The Journal of Family Practice, Vol 6(4), Apr 1978, pp 785-790, looks at the lack of support for families who have lost an infant compared to those who have lost an older child or adult and proposes ways to help the bereaved (please do not think I believe I have it any harder than someone who lost an older child or that they have more support). Thankfully there are more resources out there now through the two organizations I mentioned above. (I even sent one to family members and friends with no response or reaction…and no change.) But those are largely found and used by the bereaved themselves, not outsiders.

Women in my community spend an exorbitant amount of time just trying to get people to remember their child(ren). They create amazing art, fundraise and support causes, write heartfelt, soul-bearing stories…yet they are largely ignored or looked upon as dwelling or being negative. Death is a part of life. Of course we understand that. As much as I hate it, more babies will leave before their time. The indescribable pain of losing a child will eventually lessen as we begin to heal. But what are we to do? How can we make this subject less taboo and more accepted...because some statistics state that as many as 1 in 4 women will experience the death of a child!

It seems that wearing a pin with a lost child’s picture or name will never get the same reaction a pink ribbon will. Yet we are the same. We fight for awareness, survival and support.