by Eri Kameyama
Torrance, Calif.
On Dec. 21, 2016, my third daughter, Makoto, was born. Despite our efforts, she didn’t gain weight during her first year and remained developmentally like a 3-month-old.
Because she could only take in small amounts of food, I had to feed her almost hourly, day and night. I was exhausted and cried every day.
One day, my middle child, Haruka, who was 3 years old at the time, said to me: “Makoto is not cute. Why was she born?” I was shocked but felt that this was my internal voice. Why did I have her? Why wasn’t she born healthy like my other daughters? Thanks to Haruka, I started chanting Nam-myoho-renge-kyo to overcome my fundamental darkness, which denied Makoto’s Buddha nature.
Despite her difficulties, Makoto brings happiness to her family and is adored by everyone she meets. Photo by PAUL LIM.
Around that time last year, there was an effort to support the SGI youth all across the globe for the World Youth General Meeting commemorating the 60th anniversary of March 16, Kosen-rufu Day. The women in my organization chanted every night for the success of this event.
On one of these nights, I was praying desperately because Makoto was having one of her worst episodes of vomiting and fever—both of which began after her feeding tube surgery. I chanted, trying to summon up the courage to fight her illness and also for the victory of all the SGI youth. Second Soka Gakkai President Josei Toda had envisioned the original March 16, 1958, youth gathering as the Ceremony in the Air, depicted in the Lotus Sutra, in which innumerable Bodhisattvas of the Earth emerged in front of Shakyamuni with a vow to spread the Buddha’s teachings.
As I chanted, I started to experience great joy from within, and I genuinely felt that all of us were part of that ceremony as Bodhisattvas of the Earth, and that Makoto was definitely one of them. She had joyfully emerged with a noble mission to fulfill.
With this shift in my heart, my husband, Toshi, and I were determined to find answers and sought all possible medical help. Because Makoto was hospitalized for her fever, she became eligible to take a very thorough and expensive genetic test, which normally isn’t covered by insurance.
We learned that Makoto has a rare genetic disorder called Cardiofaciocutaneous (CFC) syndrome. Although this meant that she would have a very different path from many kids, I wasn’t devastated; I embraced Makoto, just as she was.
After notifying the day care about her diagnosis, we were asked to leave because they couldn’t accommodate her needs. This was one month before the 50,000 Lions of Justice Festival was to be held on Sept. 23, 2018.
I frantically reached out to many day care centers, but none of them would take in Makoto. If we couldn’t find another provider quickly, I would have to quit my full-time job.
She had joyfully emerged with a noble mission to fulfill.
We chanted for the best place for Makoto. A week before the festival, I found a small family-run day care. I learned that they had once cared for a child with a feeding tube and an even more severe condition. They told us that they would be happy to welcome Makoto.
At the previous center, Makoto was often taken into a different room because she would start crying. But at this new place, they cherish her and teach other kids to be gentle with her. They take her outside to play and do crafts, and they play music and read many books to her. I’m so thankful that Makoto is treated as an equal. This was our victory from making all-out efforts for the 50K Festival, and much credit goes to my husband, who brought three co-workers to the festival and continues to make many causes to advance kosen-rufu as a district men’s leader.
In addition, Makoto was approved to receive free physical and occupational therapy at home. This was a huge benefit as I previously had to pay high copays and take her to a facility twice a week. She also received a rare educational opportunity with a 2:1 student-teacher ratio for special needs children younger than age 3.
Because I work full time, the school called an advocacy agency to coordinate a taxi service for Makoto to be paid by the school district. I was amazed how the world around us moved to serve our daughter.
Makoto turned 2 last December. She is healthy, without any severe conditions that are supposed to come with CFC syndrome, such as heart defects and epilepsy. She is making progress at Makoto’s pace.
Every milestone she achieves brings our family extreme joy. Most recently, we were so excited to see her start crawling! Despite all her difficulties, Makoto is always smiling radiantly and is adored by everyone she meets, including her teachers and therapists.
Recently, Haruka sat with me looking at Makoto and said: “Mommy, what a cute baby! Isn’t it great that Makoto was born?” I was struck again by her words, because I realized that I felt completely the same way.
I can’t think of my life without Makoto. She is my teacher, because she teaches me that every single person has a Buddha nature. Makoto brings so much happiness to our family. The fortune is mine to have her as my child. WT
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