Thursday, May 28, 2009


I had forgotten how peaceful you
used to look when you slept;
the way your arms flapped wide open;
how you clenched that tiny
hand around your thumb.
I had forgotten the way your little ears
tucked into that first knit cap;
the white one with the pink and blue thread throughout,
made for you with love by the hospital volunteers.
I had forgotten the way your lower lip,
so perfect and pink,
would sink in when your mouth was closed;
how you'd lift and readjust your head
until you found the perfect place to fall asleep.
To the anger and the loss and the hurt
I had forgotten so much;
until you reminded me.
You put this picture in front of me
and I remembered it all.
 ~Kristin Binder

Wednesday, May 27, 2009

"Moving On"

Over the last several months, many well intentioned people in my life have told me that it is time to move on. I always wonder when people say this to me what reaction they’re anticipating, usually imagining that they expect it to be something along the lines of:
“Hmmmm… you’re right, move on huh?
I never even thought of that.
 Gee thanks! I’ll give that a try!”
Okay, so that was sarcastic and uncalled for, I know. The fact of the matter is that those who are grieving don’t choose how quickly they heal. Actually, there is no part of grief that is by choice. 

I didn’t choose to have a child born terminally ill. 
I didn’t choose to fall in love with her, to let her huge spirit envelop me and to believe in her ability to beat this. 
I didn’t choose to be put into the impossible role of decision maker when it came to treatment plans. 
I didn’t choose to feel a part of me die right along with her. 
I didn’t choose any of these things anymore than I can choose how long it takes my heart, mind and soul to mend. 

I, like any other sane human being, would like nothing more than to be surrounded by joy. To see my dreams realized and feel the warmth of happiness. To have children and watch them grow. Believe me when I say that I wanted those things yesterday, and the week before that, and the months before that - it is getting my soul to sync up with my desires that is proving to be such difficult and taxing work.

One of the things that most people don’t realize about grief is how incredibly exhausting of a process it is. I have been in this fight, for lack of a better word, for over seven months, on the heels of forty two weeks of pregnancy, an emergency c-section with no time allowed for healing, and twenty eight days of round the clock panic and life and death decision making. It takes time to recover from this. How long? That is for God to decide, even I don’t know. What I do know is that each morning I wake up and offer whatever my best is for that day. Some days I even surprise myself. On others I come up short. 

Each day I try to honor my child, my husband, my family and myself while looking towards the future, but sometimes, in trying to accomplish even a fraction of what I set out to do, my energy is sucked dry. Missing someone is tiresome. There is no rhyme or reason to the ebb and flow of emotions that the bereaved feel: sadness, anger, hopefulness followed closely thereafter by hopelessness, guilt, dismay; but one constant in the process is just how endless the cycle can seem.

For months I have been hearing about this magic pill, this “cure” called moving on. I have been trying to figure out exactly what moving on means, how to utilize moving on, and where I should be moving on to? To me, moving on implies leaving something behind, and leaving any of Peyton behind, even the painful parts, is not an option. I am sure it seems simple enough to those who say it - those who don’t know the feeling of tumbling unexpectedly from the top of the world - don’t know what it is to look in the mirror and no longer recognize yourself - don’t know what it is to try to rub away the lasting empty pain that only a bereaved parent can feel in their arms, but for me, there is no moving on. 

There will never be a day when this loss is not ingrained in me, never be a time when Peyton is not my first born child, or when her absence from our everyday lives isn't felt. I cannot move on, as so many have suggested, I can only move with. And for now, that is what I am exhaustingly working towards - trying to find a way to live this life, to find joy in it once again and to see our dreams fulfilled with Peyton. 
With the memory of her.
With that little spirit.
With her unguarded love.
And even with the unrelenting pain of her loss. 

Thursday, May 21, 2009

It's in the little things...

Sometimes the greatest displays of love, those that mean the most to us and bring supreme joy to our hearts, can reside in the seemingly smallest of actions. Yesterday morning, I was reminded of my husband’s unconditional love, through the placement of a two inch strip of paper on my dresser. Something so simple, so fragile, reminding me of how blessed I am to be loved by that man.
  I can’t say that losing Peyton has been any harder on me than my husband; only that we grieve in entirely different ways. Where I cry and talk and question incessantly, he tends to be more accepting. Where I retreat to deal with my pain alone, he chooses to find joy in the company of others. On Tuesday night, as we sat at a restaurant waiting for dinner, I mentioned that I had been in a real “funk” all day, feeling frustrated by my inability to be “strong” during this, and doubtful that things will ever be the way I had imagined them. It’s been seven months since Peyton died, and sometimes it feels as raw as if it had been only seven days. The fact of the matter is grief doesn’t respect time; there are okay days and there are bad days and Tuesday just happened to be the latter. I began to question whether my weakness bothered him; if he was upset with me for still being so broken up; what he wanted from me.
 “That’s simple,” he answered, his tone honest and caring, “I want you to be happy.”
  Our plates arrived and the subject changed; this exchange becoming just another blip on the radar. We began to talk instead about our meals, the saltiness of my drink, how his day had gone. I had actually totally forgotten about the conversation until I woke up yesterday morning to find the tiny slip of paper, a Chinese fortune, retrieved from the pocket of a loving man and left intentionally in plain site. Leaning over it I read the blue lettering:
Happier days are definitely ahead for you.
  This may seem insignificant, but to me meant the world. I remembered that my husband mentioned that he had gone out for Chinese with some friends over lunch. I pictured him reading the fortune, then placing it in his pocket so that he could bring it home to share with me. For the first time in a long time, I started my day with a smile. Even in this darkness I have never been alone; he has always been at my side. I am blessed by the love that I share with this man, and it is my faith in that love that tells me that we will find those happier days together.

Sunday, May 17, 2009

There Is No Shortage Of Grief In This World

The odds of a child developing infant Leukemia are 1 in 5 million. The odds of a child being born with infant ALL w/ MLL rearrangement as Peyton was fall somewhere in the ballpark of 1 in 50 million. As new parents facing down such overwhelming statistics it was, and at times still is, very easy to feel alone; like this unexpected loss of a baby is something unique. It was ridiculous for me to have ever imagined a world where babies don't die. My grandmother lost her first two children, and until now I never really understood exactly how strong she was to just go on drawing breath through the experience. Her story of loss had a happy ending, she and my grandfather went on to have 3 more healthy children, the last of whom went on to have me, yet even as she approached ninety she couldn't speak of her first two children without the inevitable tears. Listening as a child to her recount the stories of their lives and passing, I always imagined her world to be a foreign one. Yes, it was sad to know she had lost those babies, but that was years ago; medicine wasn't what it is now, I had always told myself, babies don't just die these days. One lesson that I have learned the hard way is just how naive I was in my thinking. Since Peyton's passing, dozens of people have shared their own stories of loss with me. I wish I found comfort in the numbers, in knowing I am not alone in this but I don't. Instead I find myself grieving the loss of my own child, as well as of theirs. 

Last week Dru and I took a trip to one of the larger cemeteries in the area at the urging of the man who is designing Peyton's stone. He wanted us to visit there because they had a large infant section, and he thought we should see the various designs. I don't know why I had fooled myself into viewing this as an errand. I don't know why I thought I could shop these stones the way you would the racks at Kohls or a car in a salesman's lot. At first I glanced them over one by one, taking in the carved booties, crucifixes and teddy bears. I tried to keep my distance from imagining their stories, their families, and the cries from visitors at their funerals. After only the first few stones I realized I couldn't keep these little ones out of my heart. Each name I passed, each little stone, each little life brought a greater weight down on my heart and I couldn't find the means or composure to do anything but allow the tears to fall... tears for my child, my loss, my feelings and pain; and tears for these beautiful little babies laid out row by row and the parents who loved them. My tears were of sorrow and empathy and anger at the injustice that parents who so love their children should have to lose them while we hear stories daily of parents blessed with perfectly healthy children who choose to neglect rather than love them. There must have been some sixty stones, most from the last ten years, laid out roughly two feet apart, and my greatest heartache came when I realized that some of these stones shared last names. Some of these parents lost children, built the courage to go on and try again, only to return a year or two later to bury another. Standing along the knoll and staring at the proof engraved that sometimes lightning does strike more than once, there really was nothing to do but hang my head and cry some more. I cried for these children and their families, I cried for for myself and my husband, and I cried in a way that I never had before for my grandmother and the pain that she endured all those years ago. 

I could feel the all-too-familiar whirlwind of hopelessness and grief come over me; could see the future as Dru and I had imagined it slipping away, until it hit me. If my grandmother had given up, I wouldn't be here. My mother, aunt and uncle wouldn't be here. My sister, nieces, cousins and their children wouldn't be here. It's funny the way God works sometimes, bringing you to a place so dark only to show you the light back out. My grandmother stormed this hell twice but she did not give up; she did not sell herself short on having a life out of fear of the unknown. I can't lie and say that I look towards the future with naive optimism, even after this little epiphany, that part of me left this world along with Peyton, but every once in a while I allow myself to believe that this cloud so dark and cold just may not loom forever.

Lynette Kraft, another bereaved parent blogger once wrote about the loss of her daughter: 

"God can take a life that is peaceful and sweet (and a blast)....and bring a storm. When the storm hit we were all faced with enormous heartache. But then God began to heal our broken hearts, and life began to hold beauty and happiness again. That's the kind of God we serve."
And so I will try to remember this, even if it is just for today; that  while there is no shortage of grief in the world, and while life sometimes feels completely unfair, that there is the possibility that one day life will begin to "hold beauty and happiness again". Until then, I will trudge along and wait.

Thursday, May 14, 2009

Bravefighters Memorial

Every once in a while I google Peyton's name. I know it sounds silly but there is a yearning and curiosity to know. To know if there are others with her name that are fulfilling their dreams and living. To know if she has been remembered or forgotten. Today I found a post on the bravefighters blog in Peyton's honor. I am so touched by Lea's commitment to share the stories and lives of these brave little children. Their lives, no matter how short, mattered and she gets that.

(Mother's) Day

Where I had imagined breakfast in bed,
I found only tears on my pillow.
Where I had imagined flowers and a card,
I found only flowers on her grave.
Where I had imagined a home of happy chaos and noise,
I found only weeping through silence.
Where I had imagined my child at my chest,
I found only emptiness and aching.
Where I had imagined Motherhood celebrated,
I found only another painful reminder of loss.
~Kristin Binder