Janet B. Villa
I learn much from other mothers. I learn love and unselfishness from my sister, Naomi. I learn about creativity from Rhea. I learn about wellness from Richelle. I learn about defying the odds from Rachel Santos.
I visited Rachel in 2006 to interview her for Working Mom. She talked almost non-stop, with a mouth primed for laughing and eyes built for smiling. She had just finished her licensure exams for teaching, her dream job since she was a little girl. “I am just so excited to start teaching,” she said. “But who would hire me?” She pointed to her arm, “They’d look at this and think I tried to commit suicide.”
Her right forearm was pocked with needle marks, bruises, veins, and a noticeable bump on her wrist that vibrated when you laid a finger on it. It resembled a battlefield, for that was what it was, with scars of Rachel’s crusade for her life and that of her son’s.
Rachel’s world didn’t come crashing down on the day in June 2006 when she was told she had only a few months before her kidneys would completely fail her. It had crashed much earlier than that, when a developmental pediatrician confirmed in 2001 what Rachel had previously Googled for online: her middle son, Dale, then only two years old, has Asperger’s Syndrome (part of the autistic spectrum disorder). Her husband refused to accept the diagnosis. But the mother inside Rachel kicked in—she not only accepted it: she committed to it, and soldiered on. “My son’s autism is not a problem,” she insisted. “All other issues in my life, yes, but not Dale. He is not a problem.”
To understand how to help Dale, Rachel began her Master’s in Special Education at UP Diliman. She crammed in 12 units each semester while working a full-time job. (Regrettably, Rachel was forced to stop her schooling when Dale started having seizure disorders.) Patiently she guided Dale in the usual children’s activities without treating him differently from her other children, triumphant when he got admitted to and flourished in a regular school in Pasay. Dale has since grown to be precocious and good-looking, with a deep love for and a startling knowledge of astronomy, and an almost perfect grasp of English and mathematics. He was intuitive beyond his years. When he was about six, he ran crying to Rachel, “Mommy, you have to help me. I’m not patient enough. My brain is different.” After having surreptitiously read Rachel’s books on ADHD, he announced to her that he probably had ADHD. Of course not, Rachel countered. “How could I tell him that he has autism, another kind of developmental disorder?” she said.
Rachel has written about their journey with Asperger’s Syndrome. The resulting blog—http://possibilities1217.blogspot.com—has proved therapeutic and encouraging, not only for Rachel, but also for the increasing number of readers who have children or relatives with similar concerns. That was how a miracle worked in Rachel’s life: beautiful things could come out of tragedies. “Dale’s condition also helped my husband become closer to my son. I am grateful for that,” she said.
Unlike other parents with autism in their families, Rachel was not crippled by the fear of having another child. Her youngest, Anton, was her hulog ng langit (gift from heaven) and Dale’s youngest therapist. When Dale was two and a half years old, he remained silent, communicating only in monosyllables and with tugs at his mother’s skirt. But when Anton started speaking in whole sentences very early in life, Kuya Dale perked up and started to speak. The two boys became best buddies. Anton, without knowing it, helped anchor Dale to normal activities.
Rachel was strong because, she said, she couldn’t afford not to be. Her husband, while lavishing love on Dale, remained cocooned in denial regarding his autism, so it was she who became the primary emotional caregiver especially when her relationship with her husband had suffered the usual issues of a marriage jumpstarted too early in their college years. Some of her friends and relatives had urged her to quit her marriage. Think of your life, they implored. “That’s precisely it,” Rachel said. “My children are my life. I cannot afford them to be unhappy. So I will work on my marriage.” Though Rachel had felt like giving up many times, and once did give up, she clawed her way back and fought for her family’s right to remain one, and eventually enjoyed a marriage finally pruned of marital discord. “My marriage is OK now, probably also because of my sickness. I am thankful for that,” she said. It was the same sickness to which she credited the growing closeness she later enjoyed with her parents and brothers.
Gratitude is hardly an emotion one has when one is diagnosed with Diffuse Sclerosing Glumerulonephritis. Rachel did plunge into depression when told she had only a miniscule 7% use of her kidneys. When she most needed money for medicine, she had to resign from work—a blow to their budget—when she was treated with steroids. Her weight ballooned, and she gained body hair in the strangest places. But when she saw how her illness affected her family, especially her mother who had grown increasingly stressed and frustrated, she decided it would not do for her to remain devastated. “I chose not to dwell on thinking what went wrong and finding the answers to Why me?” she said. “I told myself to breathe. After that I made a list in my mind and called it My Reasons For Breathing. On top of that list are my kids. They should have been enough, but every day I see God’s wonders, and the list goes on.”
Her children knew that Rachel was sick, even on days that she didn’t look it. (Her normal weight returned, and she lost the inordinate body hair.) They were witness to the injections she had to do on herself and the changes the illness ravaged on her body. They saw the bump on her wrist—a vistula, a forced interconnection of a vein and an artery, prepared by doctors for possible dialysis. “But they don’t think it’s anything serious,” Rachel said. “Even I don’t want to think of it as something serious.”
Rachel’s attitude was not so much escapist as it was, borrowing the words of Sir William Osler, looking at the clear facts of today and not into the dim murkiness of the future. What she can do today she will, especially when she lives on borrowed time: strengthen her faith, join healing services, enjoy the help of friends who conduct raffle fundraisers for her kidney transplant—a staggering P1.3 million that had been way out of her grasp—raise her kids, and read books.
One book that had helped her is Dr. Bernie Siegel’s Love, Medicine and Miracles: Lessons Learned about Self-Healing from a Surgeon’s Experience with Exceptional Patients. Unconditional love heals, it says, and Rachel agreed, though hers was not so much receiving unconditional love as it was giving it, particularly for her children, for whom she chose to live.
Rachel has proven that a hero is not necessarily one who dies nobly, but one who lives nobly.