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.

New Beginnings

"I'm doing something new; it's springing up! Can't you see it?

I am making a road in the desert, rivers in the wasteland."

Isaiah 43:19 Complete Jewish Bible version

I write because I don't want to forget.

I don't want to forget small moments that make up memories. I don't want to forget sights, smells, and textures that shape those memories. The smiles, laughter, and tears that help those memories stay etched in my mind.

 

But, what I've learned in recent weeks is that I don't want to forget pain. This pain that is the beginning of a new chapter in the makeup of my life and the shaping of me as a person. Its been raw and heart-breaking but I don't want to ever forget what it felt like. To be in such despair that I realized what life is really about and the trivial things we all spend so much time worrying about would melt away if given the opportunity to see life as its really meant to be.

I know I need God now more than ever and I don't want to lose sight of that. Because when I do it will mean that I have begun to think I can do it all on my own, I don't need Him and those small, insignificant things will be itching me again: a chipped toy, a broken door, a stained carpet....Life will probably seem easier in comparison to what I'm experiencing now, but I know for certain that I won't feel that great peace I have in my heart right now. The peace of knowing that He's taking care of me and the situation is so small in the palm of His hand.

(Right after I took this picture Emerson looked up at the sky and yelled,
"We love you Baby Everly!")

With all of this pain has come reward and I know its not the end of it. 

Its amazing how good it feels to just let go. I've had to let go because this situation is so much bigger than I am and I know I can't do it alone. I need God. 

Many weeks ago my kids began reciting their new Sunday School Bible verse to me: "In the beginning God made the heavens and the earth. Genesis 1:1" The verse came easily to them and I recall once feeling as if I wish they were reciting a verse that would speak to me and help me deal with what I was going through.

About the same time we had a missionary from Haiti visit our church to tell about his experience, encourage other members to join our church's Haiti mission trip and also recognize the great work our church members had done for the country.

The missionary's name was Jeremy and he talked for a while about his history and why he went to Haiti and the work he and his team have been doing. He then went on to say that he had prayed to God to show him a word he was supposed to give our church that day. He said he started flipping towards the New Testament but he felt God kept leading him further forward. He felt moved to flip forward, more forward until he was in the early Old Testament. He was beginning to wonder where God was leading him. He finally ended in Genesis and joked about the possibility of what God was showing him. Jeremy said he heard God say to share Genesis 1:1 and he began to feel a little uncomfortable and embarrassed to share what most of us would probably see as a preschool memory verse. But, because he knew it was better to trust God, he kept thinking on why God would want him to share that verse.

What happened next was no mistake to me. Jeremy went on to say that he felt someone in our church needed to hear this particular verse and it didn't necessarily have anything to do with Haiti or mission trips. He then recited, "In the beginning, God created the heavens and the earth."

He said, "in the beginning it was damp, dark, void...it felt as if there was nothing. But, out of that nothingness God created beauty. He was closest when He seemed the furthest away. God wants you to know that although what's going on in your life may seem damp, dark, void and full of nothingness, He is right there beside you and He's not done yet."

God may have been speaking to just me or ten thousand people like me but, I knew in my heart that is was no mistake God had my kids reciting this verse in our house over and over and over. He had been speaking to my heart and telling me that He is God. He can take ugliness, brokenness and nothingness and create something magical. No matter what any doctor, test or person says otherwise, He has the final say.

(Emerson kissing Baby Everly in my belly.)

I've been holding on to this and remembering that although I may never see the beauty in all of this in my time on earth I will one day understand and see it in eternity. I will also see and hold a child of mine who has been made whole, healthy and will know that I did everything I could to take what medically was viewed as a life of nothingness and turn it into a life of beauty. 

This is not the end of the story, its just the beginning....because He's not done yet.

"A bend in the road is not the end of the road...

unless you fail to make the turn."

-Author Unknown

*Written on Saturday, July 6, 2013

Hope & The Ham Sandwich

"Enjoy every sandwich."

-Warren Zevon

(Written on Sunday, August 11th)
Someone suggested that I talk to to the baby to allow myself to better connect with her. Knowing that this is the only small amount of time that I will most likely have with her, I was open to the idea. Today was my first attempt.

I began making my lunch and thought I'd tell her how to make the perfect ham sandwich.

"Soft bread. Mommy really likes her sandwiches on soft bread."

"A thin layer of mayonnaise on both sides of the bread. Its important to spread it all the way to the edges."

I felt silly. Was anyone watching me because it sure felt like it? No one was at home other than Cash and he was asleep. I just felt like a big dork talking to myself but I still continued on...

"I am putting on a piece of American cheese, the real kind. Daddy likes the fake stuff but Mommy likes the real stuff. I tear it down the middle and put a piece on each side so that when I cut it, each side gets its on piece of cheese."

"OK, now I'm opening the package of ham and putting one slice on the bread. Some people like a lot of meat and cheese on their sandwich but Mommy likes just one of each."

I started feeling better, more brave so I kept on talking to her.

"Now I'm putting one slice of bread on top of the other and I'm going to cut the sandwich in half because I think all sandwiches taste better when they're cut. If I were going to make a sandwich for you, this is the way I would do it too. But, I don't cut the crusts because I think they're good for you."

I paused as I cut it and then said, "And that's how your Mommy makes a ham sandwich and you'll get to taste it now."

A funny thing happened. I realized that when I finished I was talking out loud as if she were really there and I knew she was there and she heard me. I felt her inside of me and began to cry. I cried for all of the times I've dreaded making my kids' lunches. I cried for all of the ham sandwiches that I'll never get to make for my girl. And, mainly, I cried because I wished I'd been talking to her much longer because I know she hears me.

I know the greater likelihood is that I only have a few short months and weeks with her before I have to say goodbye. I've never understood women who lost babies and talked about them as if they were a part of the family or had special commemorative pieces of jewelry made to honor them but, now I understand. I understand every single bit of it. It is so painful to know I have to let go soon but I know she'll be in a place where there will be no pain and with a God who will care for her even better than her own parents ever could. But, for now, while I have the gift of carrying her, I will continue to teach her about the small things I do know and hope for more time.

(Continued on October 20th)
At church we are working on a series called "Be Present." In recent weeks I am trying to give myself grace in my ability to be present. I know I'm trying to be as present as I can given the circumstances surrounding us. 

For me, being present not only means remaining engaged in the here and now versus my mind focused on the future but, in recording all of the special moments taking place in our family. I do this through my blog and the past few months I have not been able to be as present here as I would like. I hope to be better about making time for this so I won't forget the times that continued to give me hope and happiness during this challenging time in our life....

1) Driveway chalk drawings

peppered with baby shots that still break my heart a little even though years of practice shows me they will be fine after some small Band-Aids and a short few minutes.

 2) Her new found love of soccer

 and the friends that come with it. 

3) Their love for our furry family member

 4) Teaching them about filling others' buckets.

 (We made schultutes, a German back-to-school tradition, for our friends first day of Kindergarten since we knew they were a bit apprehensive.)

 5) How her outfits and sense of carrying out the everyday never ceases to make me smile.

 6) Going on four years with our traditional weekly play date, being amazed at how much they grow

 and amid all the petty fights over sharing, the amount of love they have for each other.

 7) Celebrating the birthday of Kathleen--the sitter who is more like family and helps make our house a home.

 ("Surprising" her as she walked into the kitchen although they kept asking me in front of her and loudly all day, "Mommy, when are we going to do the birthday surprise?!?!")

 8) Any time I see her in one of my childhood outfits

 9) Wet tushes and diapers

10) Their expressions

 11) The annual Fall haircut that always make me cry but transforms him into this handsome grown boy that I can't help but smile about.

 

 12) The every day treasures that we often forget like shoes on the wrong feet,

big headbands that she'll soon outgrown, 

 the way he sucks from his swirly straw, 

 his ability to crawl onto anything and enjoy whatever view it gives him, 

 and the friends our back yard invites.

 13) Their pre-school morning dances

14) How they strategically plan how they will feed the deer in our yard

 with hour long stakeouts, careful peering, 

 quiet creeping, warm smiles, fresh water

and promises of "don't worry, we won't hurt you", 

 "'dat OK, I bring to you", 

 "please wait" and ends with 

 "Ok, bye bye deer!"

 15) And when they're this little.

Being present in the small moments makes life more meaningful and gives us hope for more tomorrows. 

And speaking of hope, I can't end this post without talking about our biggest piece of Hope yet. At nineteen weeks doctors told me she wouldn't live for two more weeks and she's still giving us hope for many more tomorrows at 32 1/2 weeks strong.

"Hope never abandons you;

you abandon it."

-George Weinberg