For the Newly Bereaved

I have been thinking about where we were two years ago today: planning Ellie's memorial service, crying, staring, sleeping, crying, sitting in her room, drinking, arguing, screaming, crying...on and on and on. I was so lost. How could this have happened? What the hell do I do now?

I wish someone who had experienced the loss of a child would've helped. I didn't know about any organizations at that time. My mother-in-law lost her two month old 42 years ago, but losing her granddaughter seemed to push her off the edge a bit. I talked to her a little, but neither of us were functioning very well.

So, one of my resolutions this year is to help other bereaved families more. Below is my attempt at that!

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Let me start by sending my deepest, deepest condolences. This is so unfair. It’s unnatural. It just sucks…there is no other way to say it.

Grief is one of the most powerful emotions out there next to love. When you combine the two, it is a miracle one can even function.

It doesn’t feel like it now, but you will learn to cope and you will start to heal—although that hole in your heart never will. You have to get up every day and continue to love the memory of your sweet child and love the bright future of their legacy. Everything will have to be okay, because you are currently surviving the worst possible situation a parent can experience. Although it feels like your heart will just stop beating; that your lungs will cease to fill with air; you will survive this. 

I know nothing will help your pain. Time helps a little as does a good support network of loving, patient friends and family, but you will never truly ‘feel better’ (people will ask if you ‘feel better’ or ‘how are you feeling?’ often). That is not meant to sound dire or give anyone permission to ‘check out’.  It doesn’t mean that there won’t be good days and happy memories.  But, the situation is what it is.

So, I wanted to offer some words of advice and encouragement, if you can imagine that, during this horrific time.

The first few days after your child’s death will be a blur. Focusing on the funeral arrangements (and you should be involved or you may regret it later) and/or caring for a surviving child or grandchildren will help time move, but you are in shock...on autopilot. You will probably be bombarded by emails, calls, letters, and texts from caring and loving friends and family. Some people may come across insensitive or may tell inappropriate stories of other children passing--but they do it out of love and pain. They don't know what to say and just want to comfort you. You may feel you need to make them feel comfortable by being polite or thanking them, but no one should expect that right now. They are there because they care and love you. They don't expect anything in return. It is hard to ask for help and one never thinks they will experience the death of a child. But people are amazing in these situations; so caring and self sacrificing. Let them help.

You may go through an array of emotions if you haven't already: anger, guilt, sadness, fear, loss, etc. You may question your beliefs or find extreme comfort in them. But your grieving will be your own process that cannot be directed or explained. There certainly isn't a timeframe. You just need to be.

When visiting friends and family begin to leave, you will continue to go through the motions, writing thank you notes, possibly going back to work, cleaning out your child’s room, caring for surviving children, etc. And you will re-live everything over and over again. You may snap at family members or need to be alone. You may need to talk about what has happened or you may need to stay busy. Or you may just need to sit and cry and stare. You may talk about getting pregnant right away or about never having another child again. You may drink and sleep a little too much and bathe and eat a little less often...and that ok for the moment (but don't let it consume you). You will be in survival mode. Be irrational and sad if you need to. As long as you aren’t hurting yourself or others, do what you have to in order to get through this incredibly difficult time. What has happened is horrific and not fair; it’s hard for the brain to even process. Sometimes it doesn’t feel real…a horrible nightmare.

Some may tell you, or you may read, that the divorce rate is higher for couples that have lost a child. This is not true. There is no supporting documentation or cited study for that statistic. You both are experiencing something no parent should have to. You have been through a roller coaster of emotions and have argued more than ever and loved deeper than before. It is a struggle because everyone, especially men, grieve differently (this is both due to personality types and societal pressure). But communication, space, patience and love are the key. It is not pretty at times, but you can be stronger as a couple for everything. No one else knows your pain better than your partner but don't expect them to know what is going on in your head. Lean on them, talk about what you feel and offer your understanding too.

As time passes, that amazing support from countless family, friends, and strangers will fade. It is natural and doesn't mean people don't care or don't still hurt. But they will move on while you will be stuck. However, there will be people in your life that just cannot understand your pain (and only we know how truly lucky they are to have never experienced a child’s death). They might expect you to ‘buck up’ or ‘move on’ or some other absurd thing. If you have to remove them from your life or alter your relationship, do it now! You can spend an immense amount of time just getting people to try to remember and honor your child, but is doesn't mean that they will or even want to. Their ignorance only intensifies the grieving process.

Know that you will never (or shouldn’t)  just 'get over' what has happened and that there is still support there. You are forever changed - you belong to a community of grief. You are defined as a bereaved parent now although it doesn’t have to define you. But you will need support for a long time. One year will not be enough as some will say. Yes, the first days weeks, months, and year anniversaries of birthdays, holidays, and the deathday will be extremely hard. It does not get easier with time, just less painful. You eventually learn how to cope (most days). Greif counseling or joining online groups like the Compassionate Friends or Faces of Loss, Face of Hope can provide an amazing amount of support. You may also think about getting involved in charities or service activities in honor of your child.

Memorial items of your child are a must right now. A blanket they slept on or were wrapped in, medical equipment used in their care, clothing/toys you intended for them to have, etc. should be kept. If you have experienced neonatal death, you have very few items that were actually touched by your child, if any at all. Having a memorial item made such as a necklace, bracelet, picture, cast/mold, tattoos etc. with your child’s name and birth date might help keep your child close.

After a while, and it is different for everyone, you will be able to make it through a day without the lump in the back of your throat or knot in your stomach. You will be able to smile and laugh again although it seems so foreign right now. You will be able to talk about your child without crying (although it is ok to still cry). One day you will be sitting and realize you have gone an hour without thinking about your child or your pain and you will panic. It is ok. It doesn’t mean you love them any less.

There will continue to be triggers for a long time beyond the anniversaries and holidays. A certain song or book; another baby or pregnant woman; and toys could cause you to break down in tears. Leave the situation and don’t feel you have to ‘suck it up’ or attend functions that you know will upset you. If people can’t understand how much pain you are in and display some patience and understanding, then they shouldn’t be in your life to begin with. You can choose to talk to them about this by stating EXACTLY what you need (please don't invite me to baby showers; please warn me if a movie/book you are recommending shows a child being hurt or dying or bereaved parents; please say my child's name and remember their birthday/deathday; etc.). Youc an also chose to distance yourself. Reconcilation may happen in the future, but you have to make it through every minute, so do what you must!

You may have days when you cannot get out of bed and have to stay home. You may get angry and blame yourself (after all, as a mother and father it is our job to nurture and protect our children). These are completely normal feelings of truly amazing parents (and you are parents no matter how long your child was alive!). You may also incessantly seek answers to medical complications/genetic disorders or ask why and what-if or think of all the I-should-haves. It will be tormenting to run through all the different scenarios. But the past cannot be changed although we desperately try to will it so. Redirecting those repetitive thoughts is difficult, but can be accomplished by allowing yourself to do so (as well as help from good friends/family and/or a cousnelor). Allow yourself to grieve, but allow yourself to heal too.

This life is so hard, especially without our children. But you will heal. You will sincerely laugh again. You will be able to make it through a day without crying. You will feel yourself getting stronger and loving your child even more…if that is possible.

Pain

Tomorrow is Ellie's second birthday. Time doesn't lessen my pain, it just takes her further away from me. I hold my 11 week old daughter and think about how much I love her. My 3.5 year old son makes me smile. But my heart aches. It is still missing a piece.

I love you, Eleanor.

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.