Unshared Grief and a Little Hope

"We are called to live with integrity, to express the truth as we perceive it,

and to trust God's ability to use what we offer."

-Elizabeth J. Canham

For the last year I have had this white knuckle grip on life....waiting for a call to tell me my husband has been in an accident, anticipating a tree will fall on our house during a normal rain storm or receiving a text that a friend is sick in the hospital. I've been living in this ugly anticipation of the worst of what could happen because I now know what can happen. 

Grief moves at this ugly, sluggish pace and some days it feels as if it will never end and other days are peppered with minutes of deep belly laughs with the thought that maybe you're over it and the darkness has finally passed. 

I have often felt that I am doing better. That the season of grief is over. Then, like a heavy sledgehammer, it will hit me. I realize in the midst of hanging Christmas lights and planning for my son's 6th birthday party--things that typically bring me great joy--that Everly will not get to experience it with us and I am crying as if I just lost her yesterday.

Unlike grief over the loss of a spouse, parent, friend or older child, my grief is unshared. 

When a sibling or parent has passed away, one can share in that grief and unload with other family members and friends. At special gatherings, a story can come to mind and be shared and provide a light lift from the sadness. 

Because I am the only one who carried Everly inside, no one knows her like I do. My husband and two of my closest friends were able to hold her but she never saw them. She never even saw me.

When others offer advice or ask the frequent question of "are you guys trying again?", I feel the solo target of what really translates to me as, "let me tell you how to do it better" or "are you and your husband having sex right now?" And, although I can laugh it off or cry to my husband or close friend, I am alone in the deep pain that is brought on by well meaning people. 

"Everyone can master a grief but he that has it."

-William Shakespeare

Losing a loved one alongside someone else means having another person to lean on who understands, someone who can offer a kind word when you're in pain knowing you will do the same for them. 

When you lose at child at birth or miscarriage, you are alone in your sadness. Your husband and good friends can support you but no one will feel the longing or loss like you will. This also means that, in order to keep healing, you have to reach out and ask for what you need since no one will know how you are feeling. 

We are all limited based on our experiences. Since Everly's death I have reached out to family and friends to apologize for offering advice I knew nothing about at the time of their loss or for my lack of being there after their loss. I felt, as many people do, that after a couple of months, I had moved on so they probably did too. It was not a lack of love in my heart but the limit of my knowledge. Now, I know better. Amid all of this pain I am grateful that it has sensitized me to the grief of others. 

My way of connecting with someone is to look into their eyes. I always have Dave and my kids look me in the eye before I tell them I love them. I never got to do that with Everly. She never saw me and I never saw her. I only saw her physical body and nothing beyond. When this revelation came to me during a meditation two weeks ago, I realized why I felt so short-sided. I knew Everly was going to die. Whether it was in my womb, the minute she arrived into the world, or two years later, I knew she was going to live a very short life. But, what I was really most upset about was not getting to make that loving connection of looking into my daughter's eyes so we could connect before she left this world.

I yearn to talk about Everly but my stories are repetitive. I have no memories of the first time she walked or talked, or said something embarrassingly cute. My memories are when she turned vigorously in my belly after I fed her my special ham sandwich, being witness to her overcoming great odds at my ultrasound appointments, her responding to her big sister kissing my belly and singing to her and when she began losing strength just before her birth. My arsenal of stories is small and I know friends and family will soon tire of them if I share them so I choose to keep them to myself. 

"He did not say: You will not be troubled, you will not be belaboured, 

you will not be disquieted; but He said: You will not be overcome."

-Julian of Norwich

Yet there were stories that have been shared with me that are nothing short of heaven-breathed and when I am reminded of these, my heart begins healing itself and I pass through another period of feeling fulfilled and at ease. 

Friends gave out pink glittered candles at my baby shower that were lit once I went into labor with Everly coinciding with good thoughts and prayers being said. 

Everly was born on December 20, 2013 at 8:07 p.m. and when my friend Deeana called to tell my brother Josh, he said he knew because his candle extinguished on its own at 8:08 p.m. 

As I just typed the last sentence my friend Sara texted me a photo of her lit candle with the words, "Psalms 147 says He heals the brokenhearted and to put our hope in His unfailing love. Reading and praying and never giving up hope. Don't give up. He won't fail. Grieve and heal and never give up. Love you, dear friend." 

At Everly's funeral I was talking to our nurse, Kate, who had been an angel to me during my stay there. She was reluctant about telling me that she had continually had dreams about Everly in the few weeks after her birth. Kate said she recently had a dream in which she saw an older Everly joyfully playing with a lot of children. Kate knew it was Everly because the other children were calling her by name and she also looked a lot like Emerson and especially Cash. I immediately got the chills because I had told Dave over and over how much Everly looked like Cash. 

Kate said that Everly was laughing and playing and she knew she was in a good place. And then she said, "Oh and she was eating a sandwich." My entire body felt numb and because I had to be sure it was not a coincidence I asked, "did you know I have a blog?" She answered, "No but a few people here have mentioned it and said I need to see it so I definitely will take a look at it." Knowing there was no way she read my post, I asked her, "Do you know what kind of a sandwich it was?" to which she answered, "Yes. It was a meat sandwich...a ham sandwich." 

As I type this story and relive it again I am ashamed that I even doubt a loving God. I have hated this pain that I have been carrying but, for it to go away would minimize my love of my beautiful daughter and the difference her little life has made to so many others. 

Along with the pain, loneliness and discomfort I've felt, there has also been hope. The beauty and wonder of the world are revealed to me in much smaller ways than ever before. A blue jay flying outside our kitchen window while I wash dishes quietly lost in my sadness. A bus driver who gives me a huge grin and says my son is a pleasure to have on his route. A dog that gives me a lovingly long stare. And a stranger that smiles and has no idea that he's brought me back to the reality of a life that has so much to offer. 

Paulina from Shakespeare's The Winter's Tale offers a message that I've heard many times: "Cheer up. It's over. You can't do anything to change it. Just accept it and go ahead with your life."

Many well-meaning acquaintances and friends have relayed this same message to me and I know they do not want me to feel guilty but, yet I do. In watching another woman in my support group who has verbalized her anger, I know that its a route I wish I would have taken sooner. I tried too soon to put a lid on my anger, disappointment and grief. But, in order to deal with grief honestly, it means experiencing its deep pain, sorrow and agony for as long as we need to; and the time frame for every individual is different. Only then will we eventually be able to move ahead. Never away but ahead.

The day that Everly left this world she was standing on the threshold of a great adventure: a place full of laughter, love, peace and no pain. Golden streets, four-footed animals that fly, ice cream to her heart's content and every toy she could imagine--my children have continually laid out for me this spectacular world called heaven in which she now lives. 

A number of weeks ago Hunter finished saying his nighttime prayers and said, "Mommy, I can't wait to go to heaven!"

Although he doesn't know what lies on the other side of this life, he has clues. Stories I have told him from other people about near-death experiences, sweet books we have read and scriptures from the Bible. 

There is a big, beautiful heaven waiting for me with a daughter and answers to my questions but, until then and for now, things other than my grief are happening in this world. I am vowing to do my best to allow myself to freely grieve but also pay attention so I don't miss the wonderful gifts of this world that will help me to heal. 

It will take time but I will feel good again. One day I'll be able to share in another mother's unshared grief. We will never be strangers. We will know at once the pain each has endured and will be mutually strengthened and uplifted in our new friendship. To help even one person is worth all the pain I've endured and for that I am grateful.

I will close with some words that I wrote the night after Everly was born:
"She was so delicate and beautiful. I loved touching her sweet little body. Carol diapered her for us and we put her in the pink smocked gown and bonnet that Robin gave her. We added the booties Megin gave her and her cross bracelet from Sari. She was a vision of perfection and I couldn't get over how gorgeous she was and also how much she looked like Cash. I took her out and caressed every part of her legs, feet, arms, hands and face. I didn't want to forget any of them. The very parts of Trisomy 18 that were imperfect were actually the parts I loved most and what I found to be so beautiful about her. The small divot in her nose, her tiny and low ears and her beautiful club foot that looks just like Mema's polio foot. I found her to be the most beautiful creation I had ever seen. Her hair felt like soft down and I kept taking her cap off during the day to just caress it. I kissed her imperfect parts that were so perfect over and over."

Happy 1st Birthday sweet Everly Hope. 

I will always love you with the heart of a mother and wait in joyful anticipation until we can be together again. You will be honored in our home as part of our family this year and always.

"Her love is everywhere. It follows me as I go about the house,

meets me in the garden, sends swans into my dreams. In a strange,

underwater or above earth way I am very nearly happy."

-Sylvia Townsend Warner

All of the gorgeous photos in this post were taken by my beautiful friend Brooke who continues to fill my heart with her friendship daily.

Stuck

"He who has felt the deepest grief is best able 

to experience supreme happiness."

-Alexandre Dumas

(Written on Saturday, April 12, 2014)
I feel stuck. 
                   
As if my feet are stuck in this thick, oozy, gray cement and although I'm pulling my legs with all my might, I'm not going anywhere.

Some days I think the consistency has thinned and I've become strong. I even think my legs are beginning to move a little more and then the thickness takes me over again and I'm stuck.

I want to write so badly yet I'm afraid.  Afraid of the emotions it will conjure up and the love.

I loved my daughter intensely and, because of that, grieving feels so lonely.

No one had her like I had her.

Photo by Brooke Allison 

I'm sure others have thought that the process for me is over because I put on a nice outfit, get my kids to school on time and have a smile on my face. I'm sure they think that if you've only known a baby in your womb how could you possibly really know her?

Photo by Brooke Allison

I'm guilty of judging just as much as the next person but, this whole experience sure has taught me a lot about being judgemental. One can never understand how someone feels unless they have been walking in the exact same shoes.

I cared for my daughter the same as I cared for my other three children before they were born but I know I put as much energy into it as I could knowing that the likelihood of seeing her alive was slim.

Photo by Brooke Allison

I prayed. I prayed so hard that God would let me look into her eyes for just five minutes. Five minutes. The time it takes to brush your teeth or wash a couple of dirty dishes in the sink or call to make a reservation. Five minutes. I didn't ask for much. God didn't deliver what I wanted and its taken me 16 weeks to fully accept that it hurt me deeply to not get what I wanted.

I feel stuck.
            Drinking a cocktail of grief, anger, disappointment and bitterness.
                      I wonder why God didn't give me the five minutes I asked for and ponder this daily.

I'm in pain and I miss my daughter. Why did another woman who gave birth to a Trisomy 18 baby just weeks later get to spend a full 10 days with her son and I didn't? Was it because she was a better Christian than me? Does she have more checks on her merit list?

When I'm honest and remove myself from the emotional part of it, I also kept praying, "But God, your Will be done. Whatever it is you want for Everly and for me, I will accept it."

But, this many weeks later, knowing He fully answered my prayer but with "His Will" and "not mine", I can say accepting it is hard and I'm not there yet.

I guess this is where faith comes in. Its trudging ahead and knowing that there are mysteries in life that may remain just that: a mystery. But I also believe that God loves us too much to leave us drowning in a vast ocean without providing a way to escape.

We all have these idealistic dreams for our life. My life is still special and amazing but, different. 
                    I am different. 
                                 I am learning a new normal and am so thankful for the friends and family that are supporting me throughout the journey to my new normal.

I feel blessed. Being a mother and loving my husband and children has been the greatest gift this life has offered. As I continue to hurt deeply I know that one day some of these empty spaces will fill again. This grief has dared me to love again and I will do it with the same intensity as I loved Everly because I recognize that I'm blessed with this hurt. Why?  Because some people never have this much to lose.

Photos by Brooke Allison

There are happy days ahead and I intend to increase their number.

Photo by Brooke Allison

"Only those that know how to weep can laugh heartily."

-Kathleen R. Fischer

Note: All of the somewhat decent photos in this post were taken by me and the most beautiful photos were taken by my good friend Brooke Allison. My daughter Everly brought us together and we were immediately connected in heart and for life. Although the photos evoke the happiness and love of this experience, Brooke also authentically captured the deep pain. I will eventually share more of this but, for now, its the joy of the gift of Everly that I most want to share. 

Post Valentine's Day Hearts

"One sees clearly only with the heart. 
Anything essential is invisible to the eyes."

-Antoine de Saint-Exupery, The Little Prince

(The following post was written by Everly's godmother, Deeana, the day before Valentine's Day. She is an incredibly special person and friend.)

Everly,

Tomorrow is Valentine’s Day and I’m thinking about the symbolic hearts that decorate the stores as well as my house. I have to wonder why we equate love with this organ in our body – this part of your body that was not fully developed and didn’t allow you to thrive in this world here with your mom and dad and brothers and sister. 

I’m quite sure that your Valentine’s shoe box will be full tomorrow with love notes, but know too that everyone here misses you so much. 

It’s hard to watch your mom because she hurts so much. She’s being so brave, getting up every day and taking care of your brothers and sister. She’s a very good mommy, as you know. They talk about you every day. Hunter wants to take some toys for you to play with in heaven and Emerson has made you some very nice pictures. They are trying very hard to honor you and everything you have taught them.

For me, Everly, I think Valentine’s Day and hearts will remind me of you and all that heart(s) really represent. 

(Emerson writing "I love Mommy, Daddy, Hunter, Cash, Baby Everly and Kathleen.")

You and your mom have taught me so much about this. How easy it is for us all to forget how fleeting and precious time can be. 

(I took this photo right after Cash said his first full sentence: "Hold hand, cold.")

While your mom was teaching you how to make a ham sandwich, I was busy complaining about the time it took each day to do Lorelei’s hair. What perspective this gave me on the gift of time I have with her. How long will she ask me to do her hair? Another 6 months maybe? Now these 15 minutes every morning have become a special time for us that used to be a frustration for me. Thank you for that gift.

The biggest thing your mom taught me was that heart and love is going all-in.  This is it, not the dress rehearsal. Let’s love deeply and get hurt. Let’s sing loudly and in my case be off key.

There is no do over and no reason to hold back. We hold back out of fear, but the fear doesn’t keep us from getting hurt it just keeps us from taking chances and leads to regret.  

I can’t imagine, not having met you, Everly. You have forever changed my life for the better.  I’m mailing you a very large Valentine Card.

Xxoo,

Aunt Deeana   

  

"All the knowledge I posses everyone else can acquire, 

but my heart is all my own."

-Johann von Goethe, The Sorrows of Young Werther, 1974