What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Nicole.
The decision to host Ma (pronounced like the month of May) was mostly mine, so the responsibility for her and her care, I determined, was mostly mine as well. My husband tried to help, but she initially wanted nothing to do with him. My two girls helped when they could by entertaining her with music and dancing, or simply with cuddles. But for several months, I shouldered much of the responsibility myself. I researched her home country, Ivory Coast, Africa, and cancer, specifically retinoblastoma, a relatively rare eye cancer. I learned about absolute neutrophil counts, Carboplatin, Etopiside, Vincristine, and Zofran. I received training on how to care for a Broviac catheter, a prosthetic eye, and hearing aids. I started to feel overwhelmed! With each doctor appointment, I felt closer and closer to the end of my rope. I became numb to any positive emotions, while my negative emotions were slowly consuming my life one day at a time. I feared that Ma would die here in the States and never be able to return to her eagerly-awaiting family. I felt guilty for not feeling more affection for such a sick child. I wondered if I ever could since she isn’t of my own flesh and blood. With that, I felt ashamed. I was jealous of the freedom and time that my friends had that I didn’t. I was resentful that Ma wouldn’t sleep well. I was angry at the lost time she caused me from my own family. And as a woman who liked to uphold a reputation for having it all together, I was embarrassed that it was all falling apart. I was just not feeling any of the positive emotions that everyone kept assuring me I should because of the “amazing goodwill of our family.” With each comment, You’re doing such a wonderful thing!, I felt more and more embittered. I hid most of this pretty well from people. But what I want you to know is that being a medical missions host-mom is hard. Like on the order of the hardest thing I’ve ever done. The length of time, the uncertainty and the severity of Ma’s disease are all contributing factors. We went in cycles at our house. About two weeks after each monthly systemic chemotherapy treatment, Ma hit a low and was all but inconsolable ... day and night. A dark cloud settled over the house. With each round of chemo, the depth and breadth of her lows were deeper and longer. When we would come out of each storm, the crying will still ring in our ears for several more days. We would jump and cringe with any sound that remotely resembled Ma’s cry. As you can imagine, this caused some upheaval in the house. We felt terrible because she felt terrible. We tried to help in any way we could, but failed. At a year and a half old, she could not communicate how she felt or what she needed, so we were helpless to her. Tempers started to run short. Homework didn’t get finished correctly. Errands were not run. The house was a mess. Baths were fewer and far between. Food became more unhealthy. And many things just got pushed to the side. At some point in time, I realized that along the way I had made myself into a martyr. Not the innocent kind we like to read about in stories, but the selfish, undesirable kind we all try to avoid. I had isolated myself in a box with all my negativity. I knew I needed to emerge, but I wasn’t so sure how. So, I continued to live life, but rather than remaining in the dark, I began to peek through the opening in the box. I fed. I rocked. I read. I dressed. I tucked. I drove. I played. I cooked. I paid. I just plain lived life. And as I lived life, love happened. A seed was planted somewhere between a smile after a hug and a look of relief after a diaper change. The seed began to grow and flourish. I learned about a love that happens - not one that is expected, like to parents, siblings and children - but one actually not dissimilar to that of your spouse. I want you to know that love is more than a feeling, it’s also a choice. I chose this girl to be in my life. For better or worse. For richer, for poorer. In sickness and in health. I chose to do this, and I had to choose love. Even in the “worse”, “poorer”, and “sickness” times. Even if those times far outweighed the “better”, “richer” and “health” times. Making this choice isn’t always easy. I began to share my struggles with others and allowed them to help me. I no longer played the part of the martyr, but instead became the recipient of others’ love, support and care. What I want you to know is that you should never go it alone. Someone is out there who can identify with your struggles. If not, someone else is out there who wants nothing more than to understand them. So let them. I have committed that I will let them too. Lord knows I will need these people when Ma and I have to say goodbye!