An update from Jamie

I’m Jamie Abenroth, related to Ned through the wedding ring his slipped off his necklace and on to my finger nearly 11 years ago. Tonight I want to give you an update about how life has been like these past few days. Thank you for being here.

Xoxo

Jamie

We are sitting at home today. Almost twenty Chinese lanterns are hung on fishing line across the expanse of our yard. One line is draped across our huge poplar tree, the maple tree whose leaves cover the whack job it once got is another anchor point, and then a few extra lines soar up to Truss’s (our five and half year old son’s) bedroom. Ned is so like his dad, Paul. They know how to rig things.

Ned is sleeping now in the free blue lazy boy we got from Craigslist. He loves that chair. When we were moving, I offered to sell it to someone for $25, but then went back and said I couldn’t. Ned is like that chair. Unpretentious, comfortable, worn because of all the love and people it’s known; all the bodies to which he’s given rest.  

Ned’s feeling a little over drugged on oxycodone, so we’re going to cut it in half. My best friend, Becky, and I are watching his chest rise, watching the space between breaths, and making sure his breaths are coming like waves – rhythmic, soothing, and just strong enough to carry his body to the next one. It’s unusual to watch another person like this, to be so close and present to only this moment. The stillness is nice. The nothing-but-this is centering and quiet. I’ve wanted less for a long time and wanted more of Ned’s presence for even longer. He opens his eyes, “You’re concerned.” No, I’m not concerned if you’re not concerned, babe. Plus, if you’re talking to me, I know you’re getting enough oxygen.

The past couple of days have been exhausting – heart, mind and soul. Truss stayed at Children’s Hospital with my mom for three days and two nights. He has a bacterial infection that most commonly comes from undercooked pork, spoiling tofu, or animal feces. We’re guessing the culprit was our bunny, Timothy Thomas, but will never really know for sure. Truss dropped 6 pounds on his once 43 pound frame through vomiting and diarrhea. He also had an unusual body rash and a 103 fever for 9 days, which perplexed doctors. One of the docs told me that these types of infections often lead to death from dehydration for those that don’t have access to clean water. I can’t imagine what it would be like to be a mother who had no place to turn but her arms.

Yesterday, Truss came home feverless (YES!) and with some chutzpah. I guess that’s what happens when you’re five, watch cartoons for three days straight, and are confined to a bed or toilet. It’s time get out, and shake your mind and body from the trance which they were in. Truss was agitated this morning and scowling at me. Pancakes weren’t right. The Gatorade was too cold. The remote control car is not charged. Daddy is still sleeping in his blue chair. Mommy is monitoring medications and looking into her doula’s eyes to stay grounded herself. Nothing is right in his world. I sat with him at the breakfast table and said I was sorry that I couldn’t be with him at the hospital. I asked him if he knew why Mommy and Daddy couldn’t be there. “Yes,” he said, “you were too busy.” And then I said, “Daddy really needed me Truss. I had to be Daddy’s doula when the doctor cut out Daddy’s cancer.”

 My mom stayed with Truss and gave me the freedom to be totally with Ned. I do feel sorrow about not being there at Children’s, but I don’t feel guilt. I didn’t have the capacity to hold both of my guys being very sick. The thought of Truss continuing to decline brought me to the edge of my being. So, I called a friend. After listening to my wavering voice, she asked me what I was afraid of. “I’m afraid he’ll die. I’m afraid that Truss will die and I don’t think I can go in and face that.” After saying it out loud, I came back into myself. Bacterial infections are frightening, and I could see myself trying to avoid the internal storm of witnessing what was happening to Truss’s body. When I spoke my fears to my dear, available friend, I saw that it was quiet in the eye of the storm. I wasn’t running away from my anxiety, I went right into it and spoke my worst nightmare aloud. I was then able to walk inside and be with my son.

My soul is finding rest in the warmth of women who know how to hold what is and be present to me. I told my doula, Amity, this morning that I love women. She gets it. “Every woman needs a wife,” she tells me.” “I think we each need two,” I say. I need these deeply rooted women around me; Women who get me and get that I may need to borrow their roots for awhile.

Ned invites people into his life, his space, and his moments. The AbenBraaten Family Reunion this year started at our house before Ned and I were released from the hospital last night. Ned, on narcotics, sporting a drain and bulb inserted into his neck, and being less than 24 hours out from having a modified radical neck dissection….yes, that Ned was loving it. He loves the life he feels around these people gathering together and he wants to be a part of it, no matter what.

Ned wants people who want to be close, to be close. Sometimes it’s for him, and sometimes it’s for them. It doesn’t matter to Ned. He just says, “If they want to come, let them come.”  I want to be like that. I’m stretching to be like that. Often times I want Ned all to myself. I want to lay my head on his chest, look into his eyes and protect the space I long to just be ours. I know there is goodness in that. But, I don’t want to hold on to Ned too tightly. I want to welcome others, too; welcome them into my life, like Ned welcomes them into his. So when two family members and a friend showed up in the moments before Ned’s surgery, I wondered how I’d feel. It was a shared moment. We were all witnesses to the protruding lump on Ned’s neck and knew that it would be gone in a few hours. They all showed up and I felt relieved by their presence. I think some of them needed to be there, and it turns out, I needed them, too.

Prior to surgery, we asked Dr. Byrd, the chief resident Nicole, Nathan the resident, Kelly the ER nurse and anyone else who walk in the room: “We want pictures of the operation, lots and lots of pictures. Can you make that happen?” I wanted to see the tumor and told Dr. Byrd so. What color was the cancer in my husband’s neck? He thought it would be black or perhaps white. I asked if I could take Ned’s tumor home. And although the melanoma had to be taken to pathology and I couldn’t, I’m glad I asked. It’s part of my husband’s body. It’s causing us to move fiercely into the moment and splaying our hearts open, which is not such a bad thing. It feels painful, achy, and heavy. But, the way we gazed at each other while Ned was on the stretcher, my head on his shoulder, felt intimate and alive. “Four children and you still love each other like that!” exclaimed our nurse. That makes me feel proud. That makes me feel lucky. That makes me feel whole. And that makes me feel like we’re on to something.

Ned’s surgery went according to plan. There were no surprises. Dr. Byrd met with me while Ned was in the recovery room. It turns out the fluid-filled lump on Ned’s neck was never a benign, fluid-filled seroma. It was always a cancerous tumor. Since Ned’s first surgery three months ago, the tumor grew from nothing to at least 3.5 x 2 cm. It grew rapidly. It’s aggressive. It’s atypical. And, it’s gone. Dr. Byrd removed part of Ned’s Parata gland, around 30 lymph nodes from the right side of his neck, the tumor and a section of skin surrounding it. He wasn’t sure if the facial nerve which holds up the corner of his mouth when he smiles was severed. He also wasn’t sure if his shoulder muscle would be dropped permanently. But, neither of those happened.

So, now we wait. We’ll hear the results of lab testing in one week. Dr. Byrd believes the melanoma actually is in the lymph nodes, despite an earlier “all clear” result. Tonight Ned is resting in his blue chair with a blanket I’ve had since childhood. It feels comforting to me to see him wrapped in it, like my arms are around him even though I’m sitting across the room. He is doing remarkably well. He’s talking about Macklemore and listening to the M’s game. He’s smiling, with his ice pack acting as a pillow. He says he never wants to do this again. It’s a lot to ask of a person, taxing on body, mind and soul. The staples extending up behind his ear and trailing down part of his neck are intense for me to look at. I don’t want my husband to be cut into. I don’t want him to have these wounds. But, the tumor is out. And when I get the pictures, I want to know if this thing that has caused so much upheaval in so many lives, is black or white.

We have no plans but to sit and rest and recover. Our home has an open door, and you are a part of our family reunion. There is no encroaching here, only welcoming. So, if you should like to see Ned or drop by Greenwood, we give you the green light in our lives. I know that the weight of all that is going on would be unbearable for us to hold alone. It’s your love – in whatever way that has been expressed, that is giving us the ability to be doing so well. I have no doubt that the prayers and energy you are sending out are being felt by us and your cards filled with warm words are like warm buttered bread with honey, nourishing us from the inside. I can’t say how honored I am that you are even reading my words. You are getting us through. And tonight I am so thankful that the surgery is over and the tumor is out. But, you need to know that I am (and I know Ned is, too) even more thankful that you are in our lives.

We love you,

Jamie