How to Live When Your Child Dies
Sue Matthews’ world was shocked when Taylor’s daughter at age 11 was diagnosed with pronounced cancer. Yet despite not having so much confidence, Matthews found that their day-to-day experiences were still under their control. In her new book, Color Your Hair Blue: A Celebration of Life with Hope for Tomorrow in the Face of Childhood Cancer , which she wrote with her sister Andrea Cohan, Matthews details how her Taylor continued to live his life as a child rather than “Cancer”. baby “- until she passed away at the age of 16.
Matthews, who is now president of the Taylor Matthews Foundation, a nonprofit that works to raise awareness and fund cancer research in children, spoke to me about how parents can cope – and even find the good – when faced with their child’s life-threatening illness. …
Learn to share your fear
Matthews says that the reason she was able to find so many moments of joy during the most excruciating period of her life was because she learned to share – there were certain moments in her mind when to grieve and celebrate. “Since the [cancer] scans are three months apart, I told myself that we were going to live a full life for two and a half months and then, you know, get very nervous,” she says. “By dividing your fear into parts, you can be more present on good days.” She never wanted Taylor to see her fall apart, so she made the shower her place to cry. “This is how I got rid of my anger and sadness,” she says.
Rethink the situation
To keep her daughter from being intimidated by life, Matthews reviewed the approaches to treatment and surgery that she had to face. “I would say, ‘You won’t go to chemotherapy today – you will kill cancer.’ Think of it like Pac-Man. Pac-Man is going to eat cancer cells. ” Taylor opened her eyes and smiled. We treated her with chemotherapy, that’s all. We would say, “Okay, now we’re one step closer to getting rid of this.” After each round of chemotherapy, they celebrated at a hibachi restaurant, which Taylor loved and Matthews hated. “It became a little ritual,” she says.
Life was crazy – their days and nights were mixed and they never knew what would happen next. “But it was kind of fun,” Matthews said. Sometimes when they took the whole family to bed in the hospital, it was like one big sleep party.
Let the people in
When Taylor was not around, Matthews reached out to those she knew she could unload — her sister Andrea was the first. “When I called her and said that Taylor had a relapse, she screamed, ‘NO! It can’t be! “I will never forget that. She was my soul mate, my sister, 100 percent of the time. ” Matthews says she and her husband had other support as well – friends and neighbors who delivered meals to her other two children and made sure they were taken care of. When Taylor developed mouth ulcers, someone brought a blender to the hospital. “My community has really become active,” she says.
Get rid of your child’s guilt
A few months after Taylor was diagnosed, she presented Matthews with a greeting card that said, “Mommy, I’m so sorry we’re in the hospital and you can’t celebrate your birthday.” The moment Matthews read this, she told her daughter, “Never say that again. Don’t ever say you’re sorry for me. All I want to do is be with you. All I want to do is be your mom, and I am honored to be your mom. ” For many sick children, Matthews says, there is tremendous guilt. They think they are ruining people’s lives and that everyone would be better off without them. Even as she camped in hospital chairs for several days, Matthews reminded Taylor that this was where she wanted to be — with her.
Fight to give your child a normal life
Even when things were shaky, Taylor never missed out on any big events – Sweet 16’s birthday parties, holidays, SAT exams, and driver’s license. Matthews made sure that she lived as normal a life as possible. After one surgery, Taylor decided to head home for Halloween, her favorite holiday. She gave up painkillers and removed the tubes. But the doctors insisted that she could not leave because she needed oxygen. Matthews refused to accept this response, telling the doctors, “Wait. Oxygen is the only thing keeping her here? When she was told that it was, she said, “Well then, order me a portable oxygen cylinder and teach me how to use it.” The next day, an oxygen tank appeared at their house in time for Halloween. Sometimes the hospital staff got upset when Matthews disobeyed orders and called her “doctor. Matthews. “” I would say, “I’m sorry. I know I’m not a doctor. But I give my daughter life.”
Rebuild so that it makes sense
After Taylor’s death, Matthews was thrown back into the world, which was incredibly difficult. “I couldn’t bear it,” she says. “People came up to me and asked what my other child’s SAT scores were. I thought you were kidding me? Parents talked nonsense, complained that their children did not know how to drive or do this or that. So I lost my friends on purpose. I had to cut out everything toxic. And to this day I still have to cut out anything toxic. ”
She says that Taylor’s life has helped her focus on the essentials and live with more intent. “Someone told me,“ Would it be better if she was never born, because then you wouldn’t have this sadness to carry your whole life? “I thought,” I can’t even believe you asked this question. ” I had 16 wonderful years with my daughter. I was blessed every day she was here. “