The Post I Had to Write for Me

When I was twenty-three I taught at a private school where I was part of a team of three teachers who taught all of the same classes and worked very closely together.  It was my first teaching job and I became close to the other teachers, celebrating with one when she shared news of her daughter’s much fought for pregnancy.  Just a couple months later I found myself in her home where she was sitting Shiva, grieving the loss of both her daughter and unborn grandchild to breast cancer.  I will never forget the look on her face, the sadness in her eyes when she greeted me.  The grief in the room was so heavy that it was almost visible, the mirrors covered, the scruff on the faces of the mourning men, the stooped shoulders, the quiet conversations.

Just a couple months before, I attended the funeral for my favorite aunt, Nette. The youngest of my grandmother’s siblings, she lived just a few houses down from me and her home was a magical escape for me as a child and teenager.  She didn’t have any children, but somehow found a way to mother everyone else’s.  Our time together was spent watching The Muppet Show and Wheel of Fortune, eating chips out of a giant metal tub and drinking root beer floats made with diet soda and diabetic ice cream because of my uncle.  We were a motley crew sitting there in the evenings when my dad had a house to show and my mom was seeing patients, all laughing a little too loud at Miss Piggy and Kermit, all eating a little too much.  In some ways Nette was the black sheep of the family, and I loved her all the more for it.  To me she was part mom, part grandmother, all friend.  She made my birthday cakes when I was a little kid and helped me sew Greek letters on sweatshirts when I was in college.  We stood in her kitchen while she hemmed the pants of the first suit I bought to interview for teaching jobs.

The week before Christmas one year in junior high school, we were having dinner at her house like we did every year for Christmas when she pulled my mom into the kitchen to look at a bump on her forehead.  It turned out to be a rare cancer that can be knocked back again and again, only to come back someplace new and without warning.  She fought for ten years, always with a smile on her face, always laughing.  During one particularly bad round of chemo that took her hair, I visited to play Parcheesi with her and my great-great aunt Hilda.  These women played for blood and they loved to get under each other’s skin.  Nette waited until Hilda got up to go to the bathroom and then took the bandana off of her head, showing me her nearly bare scalp, the patches of fuzz, the thin, veined skin.  She said Hilda wanted desperately to see what she looked like with no hair, but she refused to show her until she had the nerve to ask her to see.  She knew Hilda was too proud to ask, and so they were having a stand off.  She wanted to show me just to piss Hilda off.   For the rest of the day we giggled like little boys who had lined up tacks on the teacher’s chair, virtual daggers being thrown at us from Hilda who knew we were up to no good.  That was Nette.

The sadness over losing her didn’t hit me the day she died or even at her funeral.  Instead, her funeral was a day of food and laughter, just like the time we had with her.  My dad’s truck got stuck in the snow in the cemetery, almost as if she had planned it.  “God, please make it snow and please make someone get stuck.  If possible, please make it be Lup because the whole family loves to blame him for everything. That would be even funnier.”  Instead the sadness comes at events that she is missing, like my wedding less than a year after her passing and the birth of my kids.  It comes when I am on the floor playing with my children and realize they will never know this woman who meant so much to me.  It comes when other families are robbed by cancer.  It comes when I remember the looks on their faces…

Like my friend Krista’s mom.  Krista was in my small circle of close friends, my favorite homeroom buddy who loved to giggle about boys as much as I did, my friend with an older sister who could teach us how to dance and tease our hair even higher.  We “dated” brothers from another school and would plan together when we could see them, at dances at our school, at wrestling matches.  We tried out for band front together.  We passed notes in the halls and hung out at Kim’s house and loved life.  We celebrated my thirteenth birthday with a crazy party complete with DJ – my brother’s best friend switching out mix tapes for us – and fancy food.

But Krista was often sick. I remember hugging her in elementary school when her headaches were so bad that she couldn’t stop crying.  I remember when they thought she had appendicitis, or could it have been her gall bladder?  The doctors never seemed to know for sure, which was frustrating because to me, doctors were magicians. My mom was the town doctor and she could magically stop vomiting with an injection or sew the tip of a coal miner’s finger back on or even deliver a baby in her office when the hospital 30 minutes away was 30 minutes too far.  But the day I overheard the ladies at church gossiping that Krista had cancer and her family was told she only had six months to live was the day I realized that sometimes doctors can’t do a damn thing.  I sat in my kitchen while my mom stirred something in a big, steaming pot across the room, and without making eye contact I asked if the doctors could find a treatment to save her.  And without making eye contact she told me that it didn’t sound like that was the case.

I watched as the chemo took her hair. It cracked her lips until they bled.  Her failing kidneys turned the white around her stunning blue eyes yellow.  Her voice became weak.  The last time I saw her she held the morphine button in her hand, pressing it in a steady rhythm just in case it was time.  And then she was gone.  We said goodbye to her on a cold, rainy morning one week before my 14th birthday, and her mom held each of us in her arms so tightly, a look of utter desperation in her eyes when she held us.  Ten years later she held me again at Kim’s wedding, that same look in her eyes.  She looked at me and said, “You’ve grown up.”  Utter desperation.

Today the Niebur family says goodbye to Susan, known on Twitter as @whymommy, author of Toddler Planet, mom to two, an inspiration to more people than she probably even realized.  Susan and I were not close, but knew each other, chatted at local events, shared information (okay, let’s be honest – she shared cool stuff with me) on Twitter, attended each other’s sessions at conferences.  I will not be at her funeral today.  Funerals are really for the living, and I made sure that in life, Susan knew that I was nothing short of blown away by her brilliance, her grace, her simply unbelievable courage.  Many of my good friends will be there today and I wish so very much that I could be there for them, to support them as they grieve this loss.  But I cannot bring myself to add more snapshots of the faces of those left behind once cancer has taken someone from them.  Yes, there are conference calls keeping me home, calls that have already been rescheduled, work deliverables that need to be done.  There is bad weather predicted and I need to be here should schools send kids home early.  But there is sadness and grief and images of loss from the last twenty years that are keeping me in my chair today, unable to move.

Cancer is hell. It is pure madness that in a world where I can hold a piece of plastic, metal and glass in my hand and speak to my husband on the other side of the world, we cannot stop rogue cells from rapidly multiplying and stealing people’s children, their mothers, the most loved and cherished people in their lives.

Susan lived a life that somehow mixed faith and science together seamlessly without contradiction.  It is with faith that I pray today for those who loved her most and will grieve for her forever.  It is in the name of science that I ask you to stop by the following foundations and consider supporting them today:

Inflammatory Breast Cancer Research Foundation

American Cancer Society

Pediatric Cancer Foundation

Lymphoma Research Foundation

St. Jude Children’s Research Hospital




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  • I’m in tears reading this Amy. Thank you for sharing your thoughts, and your experiences. While there are no words that can touch your loss, I am sorry for all the amazing people that you have lost to such an awful disease. Thank you for sharing organizations that I can support.

  • {{HUG}} I am so so sorry, Amy! I wish I could have known Susan – and Nette and Krista. They all sound like amazing women.

    I wish there was something I could do or say to make it better. But, I can’t. So, I will send you virtual hugs. I will send good thoughts and prayers for Susan’s family and everyone she touched.

  • I’m crying too. What a beautiful post. I never got to talk to Susan one on one, but I did get to hear her speak, and I admired her strength. It’s not right that such a vile disease should claim the lives of so many beautiful souls.

    Last night was the kickoff event for our local Relay For Life. My brothers and I will be walking for my dad, whose one year remission anniversary is coming up next month. I throw my support wholeheartedly behind organizations like the American Cancer Society, whose research dollars made it possible to discover the stem cell transplant that sent my dad’s lymphoma packing.

    I hope that, one day, those research dollars will go even further to eradicate cancer, so no one ever has to say goodbye to their Krista, Nette, or Susan because of cancer again.

  • SuZ

    Oh, Amy… what a beautiful post. I am sending you, and everyone else (myself included) touched by that monster, prayers and hugs.

  • It really is amazing how deeply felt the loss of a social media friend can be…isn’t it? I was also absolutely heartbroken when I heard that @whymommy had passed away, and can only hope that she has found peace and an end to pain.pee

  • anne hill

    oh nooo. it’s shocking to read this.

  • I’m so sorry you had to write this. Plainly spoken cancer is a bitch. My friend from school has had it since her 30s and continues to fight as it pops up in random places. Now at 42 I have 3 other friends with it. For a small town that’s a lot and heartbreaking.

    I am so sorry for all of your losses and the loss of a fellow blogger and her family.

  • This is a beautiful tribute to women who have fought this terrible disease. I am a new “mommy” blogger and had not heard of Susan Niebuhr until she was gone, but the outpouring of love and light from this blog and so many others over the last few days makes me wish I had known her, and grieve for her children. Thank you.

  • Janet

    I’m sorry for your loss, Amy. I found Susan Niebur’s blog after reading your post about her. I read entry after entry and was blown away by her words and the courage she showed as she looked death squarely in the eyes. My heart goes out to her family, especially her children. Heaven has a new angel now.

  • It is SO heartbreaking that Susan is gone. Just so terrible!

    I am so sorry for all the loss you have had in your life Amy! HUGS

  • I am very sorry for all the losses too and what a beautiful post. We have all lost someone to cancer which is the horrible and unshakable fact. I am rooting for an uncle who has recently undergone treatment again for lung cancer, that was after throat cancer and bladder cancer. It just keeps taking pieces of him. I lost both my father in law and mother in law to bone cancer only five and seven years ago. Some of the bravest and most amazing people I have ever known. I never met Susan, but read a lot about her and followed her from afar. I was shaken too by her loss, even not knowing her well, because it is so sad and devastating and because I am a mom too and we all wish this awful disease to be cured.

  • Amy,
    thank you for taking the time to share what must have been a difficult post to write. I, too, am in tears. It’s so important to cherish our memories, and make as many new ones as possible with our loved ones while we have them with us.
    All the best to you.

  • I know the pain of cancer… I have lost many loved ones to it: my uncles, my aunts, my grandpa. It took me two years to get out of a depression caused by losing 8 loved ones in a time frame of 6 months.. 3 of them to cancer.
    I am now out of my depression… Sometimes when I see deaths, it tries to creep up on me again.. but I simply decide to focus on the good and the positive. It’s the only way to live a joyful life despite all of the awful things around us.