Monthly Archives: December 2013



Our year is coming to a close and like most I have been looking back. What a year. What a beautiful, breathtaking, heartbreaking, perfectly imperfect year. I could tell you what I have learned or what I gained or what I lost. Much of that is pretty obvious. So instead, I feel like telling you what I now understand.

1) Pure joy and love. I always thought I had a handle on this one. I am a joyful person I think…I take pleasure in small things, I am easily entertained, and I love with my whole heart. I had moments of this on my wedding day as I married my best friend. And when we found out we were pregnant with Bennie last January. But the moment I heard him cry, just that quick, I understood what so many people before me had tried to explain. That all encompassing, whole hearted, never ending, instantaneous love and joy. It is like nothing else. And each day after, every one of those 25 days we got to spend with him…they were full of that exact feeling. Even the hard one. I will hold that feeling close forever. Easily and without effort. It beats all the pain, which is saying a lot. Hands down. That’s how big it was and will continue to be.

2) The blessing of a good partner. Sean has always been a good husband…from the very first day I met him, I knew he was a keeper 😉 He has a huge heart, he is funny, he is kind. For all these reasons and many more, I fell in love with him. However, after this year, I understand what a gift it is to be his wife. I understand how strong he is no matter the circumstance; and on days that maybe he couldn’t be, I could try. He is an amazing father and his openness and honesty about his love for his son is inspiring, both to me and others. His ability to find the good in even the worst moments helps me to find it too. We are a good pair, the two of us. What a blessing to have found him and to have him in my life everyday.

3) The importance of friends. Throughout this year, both in the good and the hard moments, our friends and community have lifted us up. They have heaped our joy and our sorrow up on their shoulders and kept us afloat in both a literal and figurative way. The line between friends and family blurs when you are going through a crisis. And those friends who came and became one of Bennie’s people are solidly placed in our family from now on. Those who mowed our lawn and built our patio and cleaned our house and cooked us dinner and donated breast milk in Bennie’s memory and took in our mail and paid our utility bills and sent cards and made donations and created and hosted a benefit and washed our clothes and made us priceless momentos and sent us flowers and held us while we cried…and so much more. That is something we can never repay because it was all done out of love, to make an impossible situation a little more bearable. Wow. That’s all I can say. Thank you.
LPA football players put ‘Benton Strong’ on their helmets for the season in honor of Bennie and Sean

4) The love of family. I have always known my family loves me…they are not shy about telling me! Which is great. This year, though, their love has shown me that family knows no limits. My mother, who came the moment I called, even though dad was in the hospital and going through his own challenges. Who stayed, days and days, coming in and out, washing clothes, visiting with others when we needed our own time, baking cookies at the Ronald McDonald House because she was there so much, all the while feeling helpless because she understood what this meant, she understood how hard this must be even if, gratefully, she hadn’t had to experience it. My sister and brother in law, who came and stayed and keep coming now, even if we aren’t always good company. The joy of their children who have brought us so much comfort on our hardest days. Who can stay sad when a 3 year old is singing Jesus Loves Me or Jingle Bells? No one. We have been surrounded by love on all sides. And they will help us keep Bennie alive. There is nothing better than that.
Hazel wearing Benton’s baptism hat on her baptism day
Grandma Solveig reading Benton stories

5) The power of the human body. Prior to pregnancy, my body had always been a bit of a challenge…lots of chronic conditions, endless doctors, unending tests and treatments. I never liked it much. I remember seeing a pancreas at the “Body Worlds” exhibit in Cincinnati and thinking, “That stupid little thing has caused all these problems?!” Uf. Then I got pregnant. And the doctors visits and tests increased 100 fold. And I was nauseous and had heartburn nonstop and was swollen and felt like my bladder was a trampoline and my little ninja baby kicked me in the ribs so hard I couldn’t stand up sometimes. Yet, despite all of that, I really started to respect my body in a way I never did before…to really listen to it and care for it so that I could care for Bennie. And then he was born. And even though in my head I understood the idea, the reality of a person coming out was still the most amazing thing I have ever experienced. During Bennie’s struggle, my body went through it’s own transition. That was not so fun. But his little body, wow, what a miracle that was. After we got a scan and really realized what was going on with him, we knew what an absolute miracle he was, more than we had known before…he was living with 5% lung capacity. And cooing and squirming around just like any baby would. There is absolutely no medical reason he should have lived more than a few hours. Yet, because of amazing doctors and nurses and, in the end, his enormously strong will to live, his little body gave us nearly a month of memory making. If you ever doubt that you can do something, just think of that. Our bodies can do amazing things.

6) The strength of grief. Grief is a force that takes over your life in ways I cannot even begin to explain. It has the potential to crush your spirit and your body and your relationships and your beliefs to a point where they will never recover. It can suffocate you with its weight and leave you without memory of how you have spent your time, for hours or days or weeks or months. I really couldn’t tell you anything about the month of October besides Bennie’s services that first week. In grief, however, you do reach a point where you have to decide if you are going to let it win…or if you are going to stop fighting it and understand that it can co-exist with the rest of your life. You can be grieving and find joy, or love, or peace. It can happen. But, even after you decide that, the strength of grief never dissipates. It just gets rearranged. I think it will always be there.

7) The importance of a foundation of faith. Whether you are a practicing believer or not and really, whether you believe what I do or not, there is absolutely no way to get through what we are going through without a solid foundation of faith. Faith in a bigger power who decides about life and death. Faith in a larger universe where the souls of those who have to leave us can go and find peace. Faith that you are loved, even in your darkest hours. Faith that someone or something walks beside you in those moments and helps carry you through. Faith gives you the ability to absorb what is happening to you in a way that science never can, at least in my opinion. There is no reason, there is no sense to losing a child, no matter the circumstance. It is not the right order of things. But, at least for me, faith has provided comfort in a way that no person or thing can. It comforts my heart, which really is what needs it the most. It helps me to be gentle with myself on days that I feel like I can’t go on. It helps me to be kind to my husband and my friends and my family when what I want to do is lock myself in a room and never come out. Every morning I say, “God, thank you for this day and please help me through it.” And every night, “God, thank you for this day and for helping me through it.” It helps me to understand that even the things I never thought I could handle I can. Because I’ve got help. I am thankful for that beyond measure.
Benton’s baptism

8) The power of music. Music has always been a big part of my life. My grandma was a piano teacher, my mom the church organist, my dad and grandpa love to sing. Bennie loved anything with a good drumbeat. He kicked and kicked whenever we played any 70s and 80s hair metal (particularly AC/DC) and this continued when he was born! We played music to him that we wanted him to hear…the Beatles, lullabies, Dave Matthews, classical songs, and others. We sang to him (not always well!) and some of our friends brought songs for him as well (thanks Missy <3). His room was full of sound, both from the machines he was on and from the music playing. Many of those songs we listen to now and they can pull us back to that place, with him in our arms. This is a good thing. There are others that have stuck with us for strength to make it through the day or because they make us smile when nothing else does. Or let us cry when we need to. Music, literally, has been soothing our souls.

9) The comfort of a furry friend. We have two cats. One is big and round and cuddly. One is small and quick and a bit more standoffish, unless you have treats. When we came home without Bennie, which was so awful and hard, there they were, at the door, meowing and purring and telling us how happy they were to see us. I remember very little about those first few days, but one thing that sticks out in my mind is that both of these furry friends jumped into our bed and stayed. They let us hold them, a warm living body in our arms that felt so empty. They let us cry into their fur. They licked our tears away. They followed us wherever we went and loved us, unconditionally. I cannot tell you how theraputic this was then and continues to be now. Animals, even when they drive you nuts, are so kind and purehearted. They understand what you need even when you don’t. If you don’t have one, get one. You never know when you will need them.

10) The value of the small things. It’s easy to get busy and lose track of what matters. Work and life take over and pretty soon, you’re at the end of another year and trying to figure out how the time went by so fast. And what do you remember? You remember getting up and going to work and coming home. You remember a few moments with family and friends. You remember the big stuff, like births and deaths and marriages. I look them up for people every day at work. But while you are busy doing that, you miss life. I never understood how important it was to live in the moment until I met Bennie. I spend my life “living” in the past. I value that history. But, after Bennie was born I understood that every single moment, each breath, each wiggle, each blink of an eye was just as important as all those larger things. So, really, in the end I understand that I need to be present in whatever I am doing, whether that is watching TV or filling up my gas tank or holding my son. I need to hold on to the value of those moments because those moments make up a very big life that at the end of this year is beginning again, just not how I had planned it.
Bennie’s cute little wrinkly toes

So, as 2013 ends I think I understand life more clearly because of death. What a strange and beautiful journey this has been and will continue to be. Going forward, I think there are some more things to learn. But I think the most important is this…the pain of losing Benton will never outweigh the joy of having him. And that joy never ends. It will come with us into 2014 and be with us in our next adventures. I miss him. Everyday. I love him. Everyday. This year and every year. Forever and always.





Today, I woke up and didn’t hate Christmas. I suppose I never did hate it. But I have been dreading it in a way, even if much of what happens around the holidays is comforting and good. I am not sure what happened or why there was a shift. I just know there was, about Christmas and really about my outlook in general. From many others I have talked to about grief, they always say, one day you will wake up and it won’t hurt quite so much. It won’t be better. It just won’t be so overwhelming. I think that was today for me. I woke up and felt the closest to myself that I have felt since Bennie was born. Now, of course, my self has changed. A lot. But I didn’t feel so weighted down by my grief. It was there as always. It will always be, I think. But today, I felt like I could live with it…next to me…like a companion…instead of an oppressor. It is a good thing, this shift. Because sometimes I still feel like I can’t breathe. I still have moments of enormous pain. But, today I realized that those are ok. They are part of me now. And I guess maybe I just finally stopped fighting against them so hard.

It made me think of my very favorite Christmas song. It’s called “In the Bleak Midwinter”. Cheery, right?! But it kind of feels like me right now. It’s in a minor key, it’s very contemplative…rather haunting really. I have always loved it, more than any other. It’s perfectly full of peace and pain…which seems contradictory, but as I have learned this year, really is not. Those can be coupled emotions. The composer knew this. I know this. And I love the last verse the best..what can I give him, poor as I am? If I were a shepherd I would give a lamb…if I were a wiseman, I would do my part…but what I have I give him…give him my heart. Oh my, do understand that. Bennie’s got my heart, for certain. Which is perfect in it’s peace. And perfect in it’s pain. I love it. And him.

Remembrance and hope


In the last few weeks, I have spent a lot of time trying to figure out how to “deal” with the upcoming Christmas holiday. And really what I have discovered is that I am actually trying to figure out how to deal with other people…not so much with my own experience. I think a LOT of my time has been spent doing that without me consciously understanding that I was doing it. What will others say or do that will trigger my next breakdown? Will they include Benton? If they do, how will that make me feel? If they don’t, how will that make me feel? Does it really matter if I can’t handle the expectations, both my own and theirs? The one thing I want, I can’t have. So, what can I do to honor Bennie’s memory that won’t feel forced? How do I explain to people that the “merry” is lacking this year, though in many ways the joy is present? The joy of being Bennie’s mom. The joy of my time with him. The joy of looking at his pictures. But, that is different than the “merry” of Christmas. How do I explain that?…or maybe I can’t. I know that the holiday traditions that used to be comforting no longer are…at least right now. So, I started some new ones. And those felt OK. I have surrounded myself with Bennie’s things…his pictures…music that makes me think of him…and that feels good. A beautifully kind woman who lost her daughter said to me that after she died she hung photos up everywhere and kept her room for years…and if anyone said anything about it, she simply stated, “well, you don’t have to live here”. That made me feel like it made sense. And wasn’t crazy, which it feels sometimes. Another said that what she most remembered in those early months was how lonely she felt, even surrounded by people. Because, as with all loss, after the initial shock, people do stop. They stop calling. They stop dropping by. Because, they don’t know what to do. Or say. Or they think you need time or space or privacy. Or, because you don’t respond and they think you want to be left alone. I think, sometimes, that is true. But I can’t tell you how often I have gotten a text or an e-mail or a letter or a message that I don’t respond to that has gotten me through the day. I hope people know how much I appreciate them, even if I don’t say so. Those moments of support, even from a distance, help so much. More than anyone can ever understand. Please don’t stop if I don’t answer. I will, someday. I will.

I watched a webcast about remembrance during the holidays. Parts were helpful. Parts weren’t. But, the one thing I really found important in it was the many times the parents said, “Don’t forget…please remember…please include…” I think this is the key. My child, his life, his death…they are all important to me. They all changed the person I am, right down to the molecules. He changed my understanding of love. He changed my understanding of life. He changed my understanding of strength. He changed my understanding of peace. He changed my understanding of sorrow. He changed my understanding of joy. All of it. My whole worldview. SO, please don’t forget. Please don’t dismiss. Please don’t tell me I will “get over it” or I should “move on”. Please tell me you are thinking of us. Please tell me you are thinking of Benton or remembering something about him. Please understand that he is my family, whether or not he is here on earth. For that reason, please include him in our holidays. Please light a candle for him. Please ask me to share memories of him. And if (ok, when) I cry, please know that it is not all sadness. So much of it is joy. And all of it is love. Please buy presents for him and donate them to a local hospital or charity. Please share his story by doing something kind for someone else. Please help us to pass along his goodness.

I like to sit in our dining room, which has become a gathering spot since Benton’s death. We have pictures of him here. And his candles. And his ashes. We have spent hours here, reading cards and writing responses, writing blogs, lighting candles and remembering, crying, smiling, trying to pick up life again. It is a room we very rarely spent time in before. Strange, how that happened. But now, it is a comforting place. I like to sit here, like I did tonight, and light Bennie’s candles and eat dinner with him. Sometimes I talk to him. Sometimes, I read e-mails or work on grades for my class, or work on paperwork that needs to be filed after his passing. I pay bills. I read. I add to his scrapbook. I hug the cats. It’s a nice feeling in this space. It lets me work through life without the pressure that somehow builds when I am not here. Our Christmas “tree” (ficus plant) is here as well. I bought new ornaments this year…I couldn’t bring myself to pull out the old ones, so many of which have a memory attached. I think maybe I can’t focus on those memories this year because I am working to not lose those of Bennie. Or at least that what it feels like sometimes. Anyhow, I started fresh. Felt garland. Warm lights. A cute little mushroom. Some sparkly ball ornaments. And a pretty silver B. It’s nice. I like it. It is something new, as we move through this first holiday season that was to be a beginning…and I suppose it still is in many ways. A beginning of a new life, with a new set of traditions and a new, hope filled purpose. To honor Benton. To carry on his light. To count our blessings while we grieve our loss. There are moments when I think I wish I never had to know this sadness, this pain. But then I think if given the chance I would most certainly go through it again. Because the pain and sadness came from a place of such perfect beauty and love. In this holiday season, that’s what I want to remember. And I hope you will help us. I hope you will give us space to grieve but also help us fill the world with the hope that Bennie taught us, however you can. This Christmas, I hope. I hope. I hope.



Today, I came home early from work because of snow. Winter is upon us in full force. I am rather glad in some ways. I didn’t want to be at work. But then, when I got home I felt like I didn’t really want to be here either. I am feeling unsettled. Anxious. Angry. I suppose I have reached that second “stage” of grief. Though, really, it kind of seems like those nice, neat clinical steps don’t really make sense in real life. Because I waffle between them, sometimes in the same day. However, it does seem that the “angry” stage is the big one right now. I am angry with the world. This get taken out on the people around me, which is not fair. But I can’t stop it. Even when I try.

I recall, long ago, the feeling that the universe was out to get you…this seemed to happen particularly after some traumatic event (or what I considered traumatic at the time). For example, when you break up with someone, it seems that all you see are happy couples and all you hear are love songs on the radio. Nothing seems to feel right. Nothing seems to help. You are not as patient. You want to tell people off. You do not deal well with any additional stress, even if it seems minor to others. So yeah, I am there.

This weekend, Sean took me to a beautiful museum for my birthday. I took it in. I took pictures and looked at the beauty of it. But, at the same time, all I really saw was awesome holiday traditions that I would not get to share with my son. We went out to eat after at a German beer hall. It was early, so the place was relatively empty. But, in comes a big party of friends. And the ONE person who had a baby sat directly across the table from me. Really, of all the places, do I have to look at an adorable baby in a BEER HALL?! What are the odds. Then, the next day I had to spend the day decorating the museum for Christmas. Which I did NOT want to do…again, forced cheer and merriment, traditions I won’t get to share, blah, blah, blah. And, at days end, I was getting ready to leave and looked out into our parking lot and saw a woman beating her child. And I don’t mean a minor tap or spanking. I mean full out physical abuse. Without thinking, I ran out and stopped her and called the police and told her if she needed to hit someone, she could sure as hell hit me because there was NO way I was letting her get near that child again. Poor little dude was bruised and petrified. And the police came and I talked to them and she screamed at me and I drove home thinking, “How in the world is it fair that someone like that, who hates their own child and treats them in such a horrible way, gets to have a child in the first place? And I don’t? How is THAT fair?”. It is also the season of cute kid holiday photos and gushy happy family holiday letters and it seems that so many of my acquaintances are having babies and posting their adorable, healthy pictures online. And I want to be happy for them. And I am, in a way. But really, I just want what they have and I know I can’t have it and I HATE it. All of it. It makes me want to do irrational things like block them from my social media feed and literally tell people to leave me the hell alone. I want to stay home and stew in my anger until I feel better. Which, of course, I won’t…feel better that is.

I realize in my head that, in reality, it is simply because I am paying more attention to what is missing in my life. I do understand that. I also understand it is amplified x1000 because of the time of year. I also realize that the reason I am uncomfortable now more than I have been is because I am not, by nature, an angry person. I am, generally, a pretty happy person. I like people. I like to know about them and their lives. I like to visit with them and hear their stories and try to help with their struggles. It makes me feel good. But right now, I want to be selfish. I don’t want to hear about your awful boss or your crabby kids or your nagging spouse. I don’t want to help. I don’t want to wait. I don’t want to listen. I want to be mad.

The funny part of all of this is that Sean and I, this past week, were just talking about how much easier it is to be mad than sad. How much easier it is to focus on the bad stuff instead of the good stuff. How we are working hard to do just that. And, even after that conversation, I still want to take the easy path right now. I do. I know I will figure out how to get back on the hard path. But, you know what, it’s hard for a reason. It’s work. It’s exhausting. I’m exhausted. And angry. And I have not the slightest idea what to do about it. Which, it seems in this journey, is not a new problem. I don’t seem to know what to do with any of it. The sadness. The anger. The depression. The joy. The good. I have found no outlet to deal with any of them. I wish I could. I wish I could box them up and put them away and take them out when I am ready for them. But I suppose I won’t ever be. So, I will deal with the one that is here now as best I can. I’ll be mad. OK.

All of this reminds me of one of my favorite books when I was a kid. It was called “Alexander and the Terrible, Horrible, No Good, Very Bad Day”. I liked it so much that I hid it and wouldn’t take it back to the library…and the librarian called and told mom I had a fine and boy, did I get in trouble! That’s another story. The book, though, is about a little boy who wakes up with gum in his hair and the day just goes downhill from there. He has to sit in the middle seat, he doesn’t have dessert in his lunch, he has to witness kissing on TV, and his shoes don’t have stripes. He says he is going to move to Australia. In the end, he realizes things aren’t as bad as they seem and he is glad to have his family with him. I feel like that today. Like things are all moving against me…but, I suppose, in reality my family is around me. And I am safe and warm in my house. And I am still anxious. And not patient. And lonesome for Bennie. And mad…or at least grumpy. But, those days will not be uncommon right now I guess. Such is the way my world sits. Upside down and sideways, like Alexander’s. “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard and by mistake I dropped my sweater in the sink while the water was running and I could tell it was going to be a terrible, horrible, no good, very bad day.”