Yesterday I was walking Amelia over to a friend’s house for a sleep over party to celebrate the end of the school year. Earlier in the week, a therapist had suggested to me that I let the children know that I, too, was afraid of what the future holds. In admitting my own fears, I might give them an opportunity to express theirs.
I suppose the walk wasn’t the best time to start this discussion, but something made me say it. Perhaps it was the way Amelia had spent the afternoon curled in my lap with one of her many Nancy Drew books. It was as if she knew that I wasn’t feeling well and needed the company.
“Do you know that I am afraid, Amelia?” I asked her as we walked. She was carrying her purple pillow and I had her overnight bag. “Yes,” she responded looking, at the ground. “Do you know what I am afraid of?” I continued. “You are afraid that you are dying,” she answered matter of factly. “You know why I am so afraid of dying Amelia?” I responded rhetorically, “Because I love you so much and I do not want to leave you.” For a few steps we said nothing to one another and, surprisingly, no tears fell from either sets of eyes. “But you know what, Amelia, no matter what happens – even if I die – everything will be ok,” I reassured her, “You have the most amazing spirit and I know you are going to be ok.” Less than a minute passed and she casually commented, “I just hope that, if Daddy remarries, he remarries someone nice.” I smiled noting that amazing spirit shining though. “I’m sure he will honey.”
I know there is a long painful road ahead of her, but I also know that she has a loving father and an amazing support network that will shepherd her and her brother through this. I have to believe, for my own sanity, that she will weather this tragedy and that her spirit will remain unbroken despite the powerful blow of losing me. In the meantime, I just hold her and touch her as much as possible. I French braid her hair and admire the sun-kissed highlights. And every night when I leave her to her slumber I call out, “I love you and like you,” just as she has always bid me good night.
Bill and Aidan had a guy’s night out at the bowling alley. It was Aidan’s perfect night: dinner at Chik-fil-A, bowling, video games, and his Dad’s undivided attention. Then they came home and watched a Scooby-Doo video. I found them snuggled together on the sofa when I returned from my massage appointment. When it came time for bed, Aidan was feeling a little scared from the monsters in the video and wanted me with him as he prepared for bedtime. He held my hand as we walked up the stairs and I relished the feeling of his still tiny hand in mine. He prepared for bed and looked at his binder of Pokemon cards while I showered. Then I sang to him and kissed him good night.
Earlier in the evening, during my massage, I had a feeling of complete terror while the therapist worked on my body as I lay on my stomach. I could feel that I am nothing but skin covering bones; I could feel that my life is slowly slipping away. When I rolled over onto my back, the tears flowed uncontrollably. Fortunately my therapist is one of those peaceful souls who can handle such an emotive state. We talked openly and honestly about my fears of dying and her experiences with the loss of loved ones. I left feeling lighter, but with that nagging feeling that my body is telling me something that neither I nor anyone else in my life wants to hear.
After Aidan was off to sleep, Bill and I retired to the living room, “I’m really afraid Bill.” “What are you afraid of?” he asked. He is so black and white. He sees that I am eating so he thinks it’s all going to get better. “I can just feel it slipping away, Bill. I can tell I am not gaining weight. In fact, I think I am losing. I look in the mirror and I can see it.” I look like a resident of Dachau. I am eating everything I can, I rest every afternoon on the sofa, I minimize energy expenditure as much as possible. But it does not seem to be enough. I must have the world’s highest basal metabolic rate.
Bill is a problem solver. For every expressed emotion, Bill’s response is the same, “What do you want to do?” I admit to him that I am beginning to believe that TPN is the only way that I will be able to keep living. We spend the next thirty minutes debating the options when I finally reach my limit, “I’m tired.” I head up to the bedroom and he follows me. I brush my teeth and take my meds. When I turn around I see him sitting on the bed, his hands full and flush against his face. It is the most distressed and distraught posture I have ever seen him take. I go to him, wanting so much to comfort him. On this journey towards the inevitable end, the husband is ten paces behind the wife.
I sit with my chest and stomach against his right arm. Extending my left arm I reach across his chest, broad for such a short man, and grasp a hold of his left side. I drape my right arm across his back and rest my right hand against his collarbone where his right hand reaches up and grabs hold of mine. We sit there, silently, for a few moments. In my mind I think it seems like some sort of couples yoga pose. What would it be called? “Dear Life?” “Desperation?”
“I want to keep going, Bill,” I explain, “I want to be here with you and the kids.” I know in my heart how hard TPN is going to be. But I don’t see how I can continue living without it. I just cannot seem to get enough food in to keep my tiny little body going. Who knew such a small body could need so very much?
I never thought I’d go down swinging. I thought I’d do the graceful exit. But on Thursday night Aidan and I were sitting on the front steps. “Mom, why do teenagers kiss like this?” and then he made a funny face. “Oh, they just do that for TV and the movies, honey.” “No,” he persisted, “I’ve seen them do it in real life.” He then proceeded to name all the places he had witness adolescent displays of affection: Target, UNC, Duke, the movies, etc. “Well, it’s just a grown-up way of kissing. You’ll do it someday too.” “Ah, C’mon” he giggled. “C’mon” I playfully elbowed him in the ribs. And we laughed and laughed. Then he and Amelia ran through the sprinklers and I thought to myself, “This is worth it. I need to keep going.”