Wednesday, August 13th, 2008
Over the past few months we have ordered some books about grieving and other topics that feel relevant. One of them is called “Comfort” by Ann Hood (Amazon). It’s a short book, just a few hours to read from beginning to end. She lost her 5-yr-old daughter Grace after an unexpected and sudden attack of serious strep throat. Dawn had read it earlier, but I just got around to reading it tonight. It’s a raw, emotional, unapologetic account of the emotions that the author goes through after losing her daughter, and much of it rang especially true to me. Not that every situation was the same or that I felt exactly the same emotions, but the way she writes just seems very real and honest to me. It’s not a simple account of the time line of her daughter’s life and death and aftermath, but a glimpse into the confusing and crippling thoughts that she dealt with - that we can relate to. The prologue especially is written so well that I thought I would share it here. In many ways it captures the unfiltered and true thoughts of someone trying to come to grips with the worst possible loss, and how confusing these thoughts can be. I read it not just as the words that people say to a grieving parent, but also things we say to ourselves.
Comfort: A Journey Through Grief
She is in a better place.
She is still with you.
You should walk every day; you should write this down; you should go to church, to therapy, to the cemetery; these things will help you.
There is a heaven and you will see her again there.
You are not dreaming about her because you are closed to possibility.
Time heals. Once you have lived through all the firsts, it will get better. The first summer at the beach without her elaborate sandcastles; the first day of school, when she would have put on her purple leopard backpack with her collection of key chains - a starfish, miniature Lincoln Logs, the butterfly from Japan - and walked into first grade; her sixth birthday and her customary costume/painting/tea party birthday party; the first Halloween with her dressing as something with wings; an angel, a fairy, a ladybug; the first Thanksgiving when her face does not appear among the thirty others eating twenty-three pound of turkeys in our dining room; the first Christmas that I do not have to hide art supplies in the closet in my study, the bags bulging with glitter markers and crayons and sketch pads and modeling clay and watercolors and fat paintbrushes and gel pens and rolls and rolls of stickers of smiley faces and daisies and puppies and stars; the first Valentine’s day that she does not cut out construction-paper hearts and string them together for me; the first Easter with an Easter egg hunt or a pink basket filled with Smarties and Sweet Tarts and Peeps, the purple ones; the first anniversary of losing her, when the peonies are blooming in our garden and the air is filled with promise. After you have survived all of those things it will get easier to live without her.
Are you writing down how you feel? But I cannot write. I cannot think of anything except her, the way she looked splashing in the bathtub, the way she wiggled her toes against mine, the feel of her sticky hand holding on to my hand good and tight. Write that down! It will help!
The images of those hours in the hospital, of the doctor’s face telling you Grace was not going to make it, the rushing of the nurses’ feet with vials of her blood, the voice on the intercom announcing that Grace was in cardiac arrest, the way they made you wait outside the room, your face pressed against glass, the sounds of your screams, all of this will fade.
She is still with you. She is a rainbow in the sky. She is the butterfly in your garden. She is the cardinal in the mimosa tree. But I have called out her name to each of these things and they simply fade away. That is because you don’t believe.
You cannot stay in bed everyday and watch Sex and the City on DVD. You need to get outside. You need to walk.
You will sleep again, an entire night through. It is when I sleep that I am back in that hospital. My own screams wake me.
Take Benedryl, Ambien, Xanax, Zoloft, Prozac, Dr. Bach’s Rescue Remedy, smoke pot, drink white wine, warm milk, single malt scotch.
Go to grief groups and listen to other parents tell how they lost their children. Then you will know that you are not alone. But when I listen to how children are dying, on go carts and in fires and with guns and falling out of windows and from mistakes in the hospitals, I only feel more despair. Then you do not want to help yourself. These people can help you but you won’t let them.
God loves you. If there is a God, why would He have to take my Gracie Belle from me? Why would He do this? God only give us what we can bear. But I cannot bear this. Yes you can. You are not trying hard enough.
She is in a better place. How can a five-year-old little girl be in a better place without her mother? Heaven is better than here. But she is all alone. I am all alone.
Are you writing anything down?
Here is a book by a rabbi who lost his son; by two women who both lost children and they have written their stories; by C.S. Lewis, who lost his wife and was Catholic and wise; by a psychiatrist, a sociologist, a teacher; by someone who has interviewed parents who lost children. But none of them lost Grace. They do not know what it is to lose Grace.
You need to get out of bed; off that sofa; out of the house. This world is full of five-year-old girls. They are everywhere I go. The supermarket is full of cucumbers and blueberries and pasta. Target is full of pink dresses and purple shoes and things that sparkle and glitter and shine; the drugstore only seems to sell nail polish and hair ornaments. Out in the world there are only five-year-old girls holding their mothers’ hands wherever I go.
You should walk everyday.
Aren’t you feeling better? You got through a year of the firsts! I did not go to the beach this summer. I did not park in my usual place at the school so I could avoid watching the first graders filing outside through the playground at the end of the day. On her birthday I sat outside beside her toy log cabin and ate cucumbers and pasta and drank too much rose and tried not to think about the feel of her in my arms the night she was born on how her skin was the color of apricots, while my husband talked to her best friend Adrian Roop and his mother in the dining room. I did not know what to do with her Christmas stocking, the one with the angel on it and her name sewn in my crooked attempt to use a needle and thread. I did not know how to celebrate a New Year without her. And on the first anniversary of her death, I ran away with my husband to Cape Cod and climbed the dunes there and felt the spring sunshine on my face as if these things could make me feel better.
You look better!
You sound like yourself again.
Grace is sending you white feathers, heart-shaped stones, pennies from heaven.
Have you been writing this down?
I can’t believe that after one year you are still not going out more. You should be walking, taking Pilates, joining a gym. My body cannot move. I am paralyzed.
Here is a book about the Holocaust survivors.
Did you know that Winston Churchill, Abraham Lincoln, Mark Twain all lost children? And look at what they accomplished! Then I am not as strong as they were. Grief is bigger than I am.
Grace would not like to see you this way. How do you know what Grace was like? I believe she would want me to miss her with every cell in my body. And that is how much I ache for her. My arms hurt from not holding her on my lap. My nose aches from not smelling her little-girl sweat and powder and lavender-lotion smell. My eyes sting from not seeing her twirl in ballet class. My ears strain every morning for her calling “Mama!” when she wakes up. My lips reach for her sticky kisses. At night I search for her.
You need to give her clothes to unfortunate children. Even her sparkly red shoes? Her pink skirt? Her lei made of paper flowers? Her leopard rain boots? Her two-pointed brightly striped pom-pom hat? It is not healthy to keep a shrine. But there are shrines to lesser things. To Jim Morrison. To pets. To saints who are no longer even considered saints. But you need to move on.
Are you writing any of this down? Only the lies people tell me. There are no words for the size of this grief. There are only lies.
You will see. Time heals.
In time you will sleep again and dream of beautiful things.
In time you will not miss her.
You will see.
I also found the beginning of Chapter Three to be something I could relate to:
GRIEF IS NOT LINEAR. People kept telling me that once this happened or that passed everything would be better. Some people gave me one year to grieve. They saw grief as a straight line, with a beginning, middle, and end. But it is not linear. It is disjointed. One day you are acting almost like a normal person. You maybe even manage to take a shower. Your clothes match. You think the autumn leaves look pretty, or enjoy the sound of snow crunching under your feet.
Then a song, a glimpse of something, or maybe even nothing sends you back into the hole of grief. It is not one step forward, two steps back. It is a jumble. It is hours that are all right and weeks that aren’t. Or it is good days and bad days. Or it is the weight of sadness making you look different to others and nothing helps. Not haircuts or manicures or the Atkins Diet.
Writing about Grace, losing her, loving her, anything at all, is not linear either. Readers want a writer to be able to connect the dots. But these dots don’t connect. One day I think about how knitting saved my life, and I write about that. But how do I connect it to other parts of my grief? Grief doesn’t have a plot. It isn’t smooth. There is no beginning and middle and end.
I’ve never been much of a writer, but these days I find it therapeutic. I find comfort in writing down my thoughts, whether they are read by others or saved only for myself. This book, in it’s disjointed and raw form, encouraged me to continue writing down my thoughts and feelings, even if they are in private form rather than a public blog. And to continue sharing with family and friends. Sometimes it helps to tell a story for the 10th, 20th, 50th time. There are moments and memories that feel just as raw as the day they happened. The excruciating early-morning hours in the hospital on the day Kevin died. The long, stormy, silent drive to Iowa City. The final moments we had with him in the same PICU room where he struggled to survive after being born. Having to tell an unsuspecting Emily that her brother died. Coming home. Making funeral arrangements at a time when we could barely think. The empty days that followed.
I’ve shared some of the events and my thoughts with some people, and some close to us lived them with us. But I feel like I need to write these stories down, if not for anyone else then for myself. I hope that by continuing to write and share we will also find Comfort.
Monday, August 4th, 2008
Three months. I hate to always be thinking of how long it’s been since Kevin died and calculating the weeks and months, but the truth is that it’s always on my mind. Every Friday morning I know that another week has gone by, and when I see 8:00 on the clock I often think back to the last moments with him in Iowa City many weeks ago.
Three months is a long time for a child his age, and I wonder how he might have changed in that time. Maybe he would have had new words or new favorite movies. Maybe he would have finally learned to pedal is tricycle by himself, or ride on the little John Deere tractor. Maybe he would have learned to swim better in the pool this summer. Maybe he would have been figuring out how to use the potty. It’s hard to have memories of him be so static and locked in place. Our lives go on and change, but his doesn’t get to.
Losing Kevin is not only the loss of a cute young life and the emptiness that we feel without him, but for us it’s also the loss of so many hopes and dreams we had for him. Simple moments we looked forward to. Parents are always thinking about what their child will be like on the first day of school, or the first sleepover with a friend, or at baseball practice, or what they will think of Christmas this next year. To leave all those future moments unfulfilled is difficult. Especially when times come up where we are reminded of the fact that he would have been somewhere with us or would have been doing something new.
We went on a second summer vacation with family last month - a week at a cabin in Minnesota. It was a nice get-away, but Kevin was supposed to be with us. We had talked about how much fun he was going to have with fishing, boating, and running around with his cousin Keaton. His tiny little life vest is still hanging in his closet, unused. Like so much of our life now, the week was bitter sweet. We enjoyed ourselves, but it’s hard to get back to that kind of “naive” feeling of fully enjoying life and living in the moment. There is always the tugging of sadness just below the surface, and it has a way of adding a certain dullness to things that are otherwise enjoyable. Coming home brought some sense of comfort, because this is where I feel closest to Kevin. His pictures are on the walls and the house holds memories of our times with him. I know he is not physically here, but he is still very much a part of our lives and thoughts. It sounds strange, but I do feel like we come home to him. And it’s comforting.
We are making progress on Kevin’s garden, but it’s going slow. We bought a nice fountain to be put back there and we have figured out what we are going to do. We had a bad storm recently and one of our two trees in back fell down right where we are going to put the garden. So maybe it’s good luck that we didn’t have it done yet. Removing the old tree gave us the chance to plant a new tree in its place and watch it grow.
Emily did the Jr. Bix race again this year, and it made us think back to how much fun Kevin had last year. He “ran” the race and got his medal, probably without really realizing what was going on. I’ve been more into running lately, so I always wondered if he would grow up to be a runner, or if his heart conditions would even allow him to do that. He loved to run around the house, especially down the hallway. He would yell out “run! run!” and move his little arms back and forth like he had to concentrate on it to do it right. He was so proud of his running shoes and would show off how fast they made him run.
I was looking through the pictures on my cell phone the other day and I realized that there were pictures of him on there that I had forgotten about. It’s always nice to see new pictures of Kevin. I look through all of our digital pictures often, but obviously it’s always the same pictures. It’s really nice to see new ones, especially from family and friends who send one they think we might like.
This was a picture I took at the mall in the play area, him talking to a little cow. It was just me and him one day while we were waiting for Dawn to do some shopping, and he played there for a long time. He was fascinated with the little slide and he must have gone down it 50 times after I showed him how to do it all by himself. He looked so proud of himself each time. There were other boys around his age there too, and they were playing a little rougher. Kevin would step aside to let them go when they came around and watch them slide. He wasn’t so much interested in running around with them. He just wanted to enjoy the slide over and over. He had such a gentle spirit about him that I loved. He was so sweet and loving (most of the time!).
Emily is so much like Dawn in so many ways, and I always think of Emily as a glimpse into what Dawn was like as a kid. That’s how I felt about Kevin, too. He was a little miniature me in many ways. I wondered what parts of my personality he would have as he got older, and what things he might get into that were like me. It makes me sad that there is no little me running around anymore.
This picture is my screen saver on my phone, so I see it all the time. I often open my phone just to get a quick glimpse of him. I took this on a random weekday when I came home for a long lunch because Dawn had to be somewhere. I was organizing some stuff in the garage and he wanted so badly to play on the lawn mower (as he always did). So I gave in and stopped working in the garage so I could sit by him and play with him on the tractor. He must have sat up there for a half hour or more, always giving me a frantic “no!” when I asked if he wanted to get down.
The first picture below is the last picture taken of Kevin before he died. It’s not a great picture, but it’s special to me because it is one of the many pictures I took of the two of us with my hand outstretched. I would try to snap pictures like that all the time, but many didn’t turn out too well. Some of the others ones I’d taken in the past are below too.
We have a lot of video of Kevin, but I always wanted more of him talking and just being himself. We were lucky enough to have been invited to the Children’s Therapy Center to record a speech therapy session with Sara (his speech therapist) in February. They recorded us in advance of the telethon so they could use video clips while we told his story. Thankfully the full recording was saved and the TV station gave us a copy on DVD. I am so glad we have it, because it really shows Kevin talking and acting like his normal goofy self. He loved Sara so much and always looked forward to his time with her. He had his favorite cow toy that she always brought for him, and he loved to look in her bag to see what else she had brought. I watch the video every so often just to hear his voice and watch his facial expressions. I finally got the full video uploaded to YouTube, but broken into 4 clips because of length limitations. They are available at this page: http://www.youtube.com/profile_videos?user=KevinMatthewKruse
Finally, a note about how we are doing. We continue to do okay - it’s not like we have much choice. We know that people care about us and want to know that we are doing alright, but it’s a difficult process for us to even understand and even harder to explain. I think we have done a pretty good job of letting life go on, and continuing to enjoy Emily, our family and friends, and life in general. In some ways, I do feel like it’s gotten harder recently. As time goes by and we get further away from his death, the feeling of loss from our life deepens. I don’t want my memories of him to fade. It makes me sad and angry that it’s harder to imagine holding him or remember what his giggle sounds like. It makes me sad that life has moved on from when he was with us, and we have new routines and habits that don’t involve him. Sometimes when I’m home alone I talk to him like he’s still here. Just simple things like “Kevin, come in here, it’s time to go!” It feels like a different life, even though it was just 3 months ago. I want to hold on to that old life as long as I can, but it’s slipping away into memories. That’s the kind of sadness we deal with daily that won’t necessarily make us break out into tears, but eats away at us and makes life difficult. Sometimes the feelings of sadness will come to the surface when I hear a certain song or have a certain memory or just think about the cards life dealt him and us. I’ve learned to feel those feelings, sit and think about my memories, cry if I need to, then regroup and go on with the day. The last thing I want to do is wallow in sorrow and feel bad for myself, but I need to have those moments every couple days. It’s impossible not to.
People often ask what they can do for us, and we appreciate the kindness - but there isn’t much that we need. Nothing can take the sadness away. We do appreciate it when people let us know that they are still thinking of us and Kevin. It means a lot to know that we haven’t been forgotten, and that people are still there for us if we would need it. Simple acknowledgement that we are still struggling and that we are still in peoples’ thoughts and prayers is comforting to us.
We know that it’s not easy for the people around us, either. Some people aren’t sure what to say, or whether they should mention Kevin, or whether it’s okay to treat us like “normal”, etc. We can understand how that can be difficult. We want people to know that it’s not like we have forgotten that Kevin died, and something you say or do would suddenly shock us into remembering and upset us. We are sad, but we’re not that fragile! We like to hear from people. One of the most difficult things is to have awkwardness around people who are so afraid to say the wrong thing that they say nothing at all. It hasn’t really happened yet, but we know there will be moments where something is said by someone who never knew Kevin or that we lost our child. We can sense it in family and friends around us sometimes, like they hope nothing is said that will hurt us or make us feel weird. But really, we have talked quite a bit about what to say when these situations come up, and how to answer questions. Maybe someone will say “oh, you’re going to keep Emily an only-child?” or “you don’t understand what it’s like to have a boy!” If someone asks me if I have a son, what do I say? Do I just say no, or say yes but he died and deal with that awkwardness? If someone sees the picture of Kevin that I carry in my wallet and asks about him, what do I say? I guess what I’m saying is that these are situations that everyone knows can be awkward, and we’ve thought about them, and it’s not like we are going to be shocked or hurt if it comes up. It’s bound to at some point and really, it’s okay.
We also have a hard time knowing what to say to people, how to react to situations that are upsetting, and how to tell people what is helpful to us and what is not. It’s hard to work through deep sadness, a life that has been turned on its head, a daughter who still needs love and attention and parenting, daily life stuff that still needs taken care of, and relationships with family and friends. We still need extra patience and understanding. Please know that things are not “better” yet, and we’re still trying hard to figure all this out. Sorting through all these thoughts and feelings can be overwhelming, and we guarantee that we won’t do it all the “right” way. All we can ask for is patience while we try to figure it out, because it’s obviously a long road.
As always - thank you to everyone who continues to care about us and remember Kevin!