Monday, April 26, 2010

Parenting through Treatment

Here is a post I wrote about the challenges of parenting through treatment. It originally appeared on my website,

I got a lot of advice when I was first diagnosed with cancer. One suggestion I heard often was to let things go and take care of myself. My job, my projects, my chores would wait.

But, I wondered, what about my children? They will not or cannot wait. This is their childhood. They need me now. How is that supposed to work?

Even before my treatment began, the conundrum of simultaneously letting go and parenting came up. A few days before I started chemotherapy, my children came down with the swine flu. At the advice of an oncological social worker, we had not yet told them about my diagnosis or upcoming treatment. We were waiting until the last possible moment so as not to make them anxious. Then my youngest contracted a fever and what the pediatrician confirmed to be unmistakable H1N1 symptoms. We could no longer wait to sit them down and have The Talk. We explained my diagnosis and why I was going to quarantine myself at somebody else’s house. This was not an easy conversation and we all shed many tears. A shadow hung over our discussion. Almost exactly two years earlier, my step-brother, their uncle, had died from cancer, so the disease was very real and scary to them. The worst part of this conversation was that I did not get to hug them after we broke the news. It was the beginning of me having to deny my strongest maternal instincts in the interest of my own well-being and survival.

One by one, the three children got the virus. I stayed at an acquaintance’s house for the next ten days. A kind family with a spare room had heard of our difficult situation and offered to take me in. We had only lived here for four months prior to my diagnosis, so we had not yet made close friends. A high school chum, whom I hadn’t seen in twenty years, was moved by our situation and with only a couple of days’ notice, she flew out to help. She stayed with me and this wonderful family, accompanying me at my first chemo and my port placement surgery. Amazingly, this motley bunch of virtual strangers-turned-friends managed to support me with love and compassion as I started my cancer treatment. This wild journey, it seemed, would not just involve chaos and heartbreak; it would be cushioned by miraculous generosity and love.

When I returned home, my son, who was two years old, clung to me. His insecurity seemed amplified by my strange reemergence. In my ten-day absence, I had already been transformed. My usual peppy energy level had sunk notably and my appearance had altered. Although my doctor had told me it would take several weeks for my hair to fall out, my sensitivity to the drugs was high. My hair began to fall out after one week. After a clump came out in my brush and made me cry, my husband came by the house where I was staying to shear my curly locks.

My son wanted to be with me and I with him. I felt guilty for my limitations. I had to figure out how to parent from my bed. We read together and we talked. We developed a repertoire of games I can play with my low energy while resting. He has become so accustomed to them after my four months of treatment that on the days when I have been up and about, he sometimes becomes indignant: “But I want to go snuggle in your bed!”

Even when I am weakened, nauseous, and fatigued, I cannot stop being my children’s mother. I cannot stop loving them, caring about them, fretting about them, working to support their emerging and precious selves. But, as I said, my instincts are often denied. I really have had to let so many things go. I can no longer look after my daydreamy eldest’s organization of her schoolwork. I have consulted with her teacher, and we are lowering our original goals on that issue for this year and are focusing on her learning. She may not get every assignment turned in but she is engaging in and understanding the curriculum. I have given up trying to reorganize my middle child’s bureau drawers. I can’t participate or volunteer at the kids’ school. Even if I had the energy, it is a virus swamp and no place for the immunocompromised. The things I normally manage, that are part of my normal rhythm as a mother, have to fall by the wayside.

Although my parenting has been restricted, I can still check in with my children. Thankfully, they tell me what is on their mind. It pains me that I can’t engage with their concerns and fully protect them from the horror of what is happening to me. They see me and know that I suffer. I fantasize about having a superpower that would allow me to freeze time for them so that I could go off and get better without them having to witness the pain of treatment. In this daydream, I would return as basically my same self and we could resume our family life without this nightmarish interruption.

Early on, we bought them a book about a mother with cancer, a story told at a level that even my youngest could understand. He asked us to read it repeatedly for the first couple of months of my treatment. Two months later, when the book had lost its hold on him, he turned to me with a serious look on his face and said, almost accusing, “In the book, Sammy’s mother gets better faster than you.” My heart broke for what felt like the millionth time. A ten-minute story is so much easier to sit through than a year and a half of treatment. I wish, like him, we could just turn the page and make the time pass.

My middle child, the one who has been told repeatedly in her seven years of life that she looks just like me, expressed the most distress about my hair loss. The changes in my appearance that threatened my own identity also seemed to threaten hers. She did not want me to show my bald head in front of her friends. She urged me to get a wig. When she learned about my surgery, she asked if I would look like a man without breasts. My eldest, who is almost ten, confided her fears about her own body: she was afraid to get breasts because they might get cancer too.

But even snuggling and talking have their limits. The treatment makes me hypersensitive at times, making noise or multiple simultaneous conversations difficult to tolerate. My children are learning to have more slow and measured conversations with me, but, of course, this is not natural. The cognitive impairment of chemotherapy makes me an unreliable listener. “Mommy, don’t you remember?” is a phrase I have heard that more in the last four months than in my prior ten years of motherhood, as I, in defiance of my usual acute memory, once again forget a friend’s name, a birthday party, or a project that somebody wanted to do.

An undeniable anxiety pervades our household, bringing our reactivity up in a multitude of circumstances. Our capacity is down, so my husband and I work to push things back to make space for the kids’ needs and concerns. We worked out with the girls’ school that they do not receive homework one night a week while we attend a family support group. In general, we have abandoned some of our usual focus on their schoolwork. The vulnerability of our situation makes our emotions raw. When my son wandered off for ten minutes at the science museum, our imaginations could believe the worst-case scenario more vividly than we normally would. We know too well that the bad stuff in life is not just what happens to other people.

What, I often wonder, is my goal as I parent through this time? How am I to help the children make sense of this experience? The best I can come up with is that it is my obligation to listen and be as honest and hopeful as I can. I learned, in the twenty months my brother was fighting this disease, that there is always something to hope for no matter what course the cancer takes. With my brother, I started by hoping for a cure and ended with the wish, once it was inevitable, that his death be peaceful and that he leave this world feeling the power of the love he had created while he was in it.

So this is an opportunity to teach them, in a vivid way, the importance of love, generosity, and hope. I have marveled with them at the kindness of the people who took me in and cared for me when our family had its initial crisis. I try to help them see the weight that is lifted as people bring us meals or visit and help with chores. I hope that, with our guidance, they can see how these acts of lovingkindness are fundamental to a community and that they will be eager to give to others when the opportunity arises. I hope they see that my appearance can change, but the love that I have for them never does. My love for them endures even in these circumstances, even when I am being beaten down by chemo side effects and the drugs that are meant to alleviate them. I hope that they learn about the importance of us sticking together as a family, as they watch their dad push himself to the limits to keep everyone going. I hope they learn how to live life with joy, because only if you have been in a difficult place filled with grief do you learn the gift that is health and normalcy to the point where it can bring you true contentment and happiness.

1 comment:

  1. lani,how powerful your words are. thank you for sharing, for being brutally honest about your family + your feelings.


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