{"id":39308,"date":"2021-01-20T00:00:00","date_gmt":"2021-01-19T16:00:00","guid":{"rendered":"https:\/\/tcmonthly.tzuchiculture.org.tw\/?p=39308"},"modified":"2023-03-08T17:40:23","modified_gmt":"2023-03-08T09:40:23","slug":"the-guardian-grandma","status":"publish","type":"post","link":"https:\/\/tcmonthly.tzuchiculture.org.tw\/?p=39308","title":{"rendered":"The Guardian Grandma"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"39308\" class=\"elementor elementor-39308\">\n\t\t\t\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-16da561c elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"16da561c\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-5a32a442\" data-id=\"5a32a442\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-1ea5b2de elementor-widget elementor-widget-text-editor\" data-id=\"1ea5b2de\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.8.1 - 13-11-2022 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#818a91;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#818a91;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p><strong>By Chen Li-an<\/strong> <br \/>Translated by Tang Yau-yang <br \/>Photos by Hsiao Yiu-hwa<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5216b22e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5216b22e\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-36b817bf\" data-id=\"36b817bf\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-2c0d9635 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"2c0d9635\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.8.1 - 13-11-2022 *\/\n.elementor-widget-divider{--divider-border-style:none;--divider-border-width:1px;--divider-color:#2c2c2c;--divider-icon-size:20px;--divider-element-spacing:10px;--divider-pattern-height:24px;--divider-pattern-size:20px;--divider-pattern-url:none;--divider-pattern-repeat:repeat-x}.elementor-widget-divider .elementor-divider{display:-webkit-box;display:-ms-flexbox;display:flex}.elementor-widget-divider .elementor-divider__text{font-size:15px;line-height:1;max-width:95%}.elementor-widget-divider .elementor-divider__element{margin:0 var(--divider-element-spacing);-ms-flex-negative:0;flex-shrink:0}.elementor-widget-divider .elementor-icon{font-size:var(--divider-icon-size)}.elementor-widget-divider .elementor-divider-separator{display:-webkit-box;display:-ms-flexbox;display:flex;margin:0;direction:ltr}.elementor-widget-divider--view-line_icon .elementor-divider-separator,.elementor-widget-divider--view-line_text .elementor-divider-separator{-webkit-box-align:center;-ms-flex-align:center;align-items:center}.elementor-widget-divider--view-line_icon .elementor-divider-separator:after,.elementor-widget-divider--view-line_icon .elementor-divider-separator:before,.elementor-widget-divider--view-line_text .elementor-divider-separator:after,.elementor-widget-divider--view-line_text .elementor-divider-separator:before{display:block;content:\"\";border-bottom:0;-webkit-box-flex:1;-ms-flex-positive:1;flex-grow:1;border-top:var(--divider-border-width) var(--divider-border-style) var(--divider-color)}.elementor-widget-divider--element-align-left .elementor-divider .elementor-divider-separator>.elementor-divider__svg:first-of-type{-webkit-box-flex:0;-ms-flex-positive:0;flex-grow:0;-ms-flex-negative:100;flex-shrink:100}.elementor-widget-divider--element-align-left .elementor-divider-separator:before{content:none}.elementor-widget-divider--element-align-left .elementor-divider__element{margin-left:0}.elementor-widget-divider--element-align-right .elementor-divider .elementor-divider-separator>.elementor-divider__svg:last-of-type{-webkit-box-flex:0;-ms-flex-positive:0;flex-grow:0;-ms-flex-negative:100;flex-shrink:100}.elementor-widget-divider--element-align-right .elementor-divider-separator:after{content:none}.elementor-widget-divider--element-align-right .elementor-divider__element{margin-right:0}.elementor-widget-divider:not(.elementor-widget-divider--view-line_text):not(.elementor-widget-divider--view-line_icon) .elementor-divider-separator{border-top:var(--divider-border-width) var(--divider-border-style) var(--divider-color)}.elementor-widget-divider--separator-type-pattern{--divider-border-style:none}.elementor-widget-divider--separator-type-pattern.elementor-widget-divider--view-line .elementor-divider-separator,.elementor-widget-divider--separator-type-pattern:not(.elementor-widget-divider--view-line) .elementor-divider-separator:after,.elementor-widget-divider--separator-type-pattern:not(.elementor-widget-divider--view-line) .elementor-divider-separator:before,.elementor-widget-divider--separator-type-pattern:not([class*=elementor-widget-divider--view]) .elementor-divider-separator{width:100%;min-height:var(--divider-pattern-height);-webkit-mask-size:var(--divider-pattern-size) 100%;mask-size:var(--divider-pattern-size) 100%;-webkit-mask-repeat:var(--divider-pattern-repeat);mask-repeat:var(--divider-pattern-repeat);background-color:var(--divider-color);-webkit-mask-image:var(--divider-pattern-url);mask-image:var(--divider-pattern-url)}.elementor-widget-divider--no-spacing{--divider-pattern-size:auto}.elementor-widget-divider--bg-round{--divider-pattern-repeat:round}.rtl .elementor-widget-divider .elementor-divider__text{direction:rtl}.e-con-inner>.elementor-widget-divider,.e-con>.elementor-widget-divider{width:var(--container-widget-width,100%)}<\/style>\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5706f7d1 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5706f7d1\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-7601c757\" data-id=\"7601c757\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-16d86887 elementor-widget elementor-widget-text-editor\" data-id=\"16d86887\" data-element_type=\"widget\" data-settings=\"{&quot;_animation_mobile&quot;:&quot;fadeIn&quot;}\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p><strong><em>Jing-wei has learned to face the challenges in his life with a smile. This optimism comes from his grandma, but it is just one of her gifts to him. She cares for him, protects him, and brings light into his life. The two of them are perfect partners, learning and growing together on the path of life.<\/em><\/strong><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5c18fbc4 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5c18fbc4\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6dfd164c\" data-id=\"6dfd164c\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-c4f933d elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"c4f933d\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-54e5c23c elementor-section-full_width elementor-section-stretched elementor-section-height-default elementor-section-height-default\" data-id=\"54e5c23c\" data-element_type=\"section\" data-settings=\"{&quot;stretch_section&quot;:&quot;section-stretched&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-62d16a3d\" data-id=\"62d16a3d\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3ec39b0 elementor-widget elementor-widget-image\" data-id=\"3ec39b0\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.8.1 - 13-11-2022 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"995\" height=\"1440\" src=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02322-\u54f2\u4fee.jpg\" class=\"attachment-full size-full\" alt=\"\" loading=\"lazy\" srcset=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02322-\u54f2\u4fee.jpg 995w, https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02322-\u54f2\u4fee-207x300.jpg 207w, https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02322-\u54f2\u4fee-708x1024.jpg 708w, https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02322-\u54f2\u4fee-768x1111.jpg 768w\" sizes=\"(max-width: 995px) 100vw, 995px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-59a363ba elementor-widget elementor-widget-text-editor\" data-id=\"59a363ba\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Jing-wei comes home from school at around four in the afternoon. When his shuttle bus for people with disabilities pulls in, his grandma puts down the wheelchair ramp so that Jing-wei\u2019s caregiver can push him into the house.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3162698d elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"3162698d\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5bb83e43 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"5bb83e43\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-77edcca\" data-id=\"77edcca\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3800ecc9 elementor-drop-cap-yes elementor-drop-cap-view-default elementor-widget elementor-widget-text-editor\" data-id=\"3800ecc9\" data-element_type=\"widget\" data-settings=\"{&quot;drop_cap&quot;:&quot;yes&quot;}\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>We arrived on a fine day at an old house beside an orchard in Dongshan Township, Yilan County, Taiwan. A black dog tethered near the door barked at us relentlessly, defending its home against strangers, until a kind-looking, smiling woman walked out of the house. Li Mei-hua was the paternal grandmother of 21-year-old Chen Jing-wei, who won the Presidential Education Award in 2020.<\/p><p>As soon as we entered the house, Li enthusiastically directed our attention to a photo displayed on the TV stand. She explained that it had been taken not long before, when her entire family took a trip together. Jing-wei, sitting in a wheelchair in the picture, smiled broadly. He doesn\u2019t take trips often, so this photo captured a particularly special time for the family.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-7d10a11a elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"7d10a11a\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-3dd1a564\" data-id=\"3dd1a564\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-68bbc567 elementor-widget elementor-widget-text-editor\" data-id=\"68bbc567\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<h5><strong>The medical journey<\/strong><\/h5>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ca03f99 elementor-widget elementor-widget-text-editor\" data-id=\"ca03f99\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Li shared with us that Jing-wei had lived mostly with his babysitter as an infant rather than his parents, who had been too busy working to care for him. Nobody had noticed anything unusual with the baby, until one day a relative who lived close to the babysitter asked Li an alarming question: \u201cWhy is your grandson so limp? Infants at seven or eight months of age can usually sit and crawl around, but not yours.\u201d<\/p><p>Upset at hearing that, an uneasy Li took time off from work and went to the sitter\u2019s home to take a look for herself. She discovered that her grandson\u2019s arms and legs did indeed look limp, and that he wasn\u2019t moving and exploring very much, not nearly as much as would be expected for a typical infant his age. Worried and concerned, she and her daughter-in-law immediately took Jing-wei to the doctor.<\/p><p>It wasn\u2019t a simple matter to determine what was wrong with Jing-wei. When one doctor failed to explain the infant\u2019s condition, Li and her daughter-in-law would try another. The two of them tirelessly took him from one major hospital to another in northern Taiwan for a diagnosis.<\/p><p>Every hospital they visited put Jing-wei through a new round of tests. Blood tests were routine, but even mundane blood draws became traumatic episodes. Because Jing-wei was not yet one year old, his arms were tiny and his veins even tinier. Often a medical worker would have such a difficult time locating a good vein that Jing-wei had to endure repeated needle pokes just to have a blood sample drawn. All the while he would scream bloody murder, with great drops of blood falling from his arm. Scenes like these unsettled Li so much that she couldn\u2019t even be in the same room when he was having his blood drawn.<\/p><p>\u201cMost doctors couldn\u2019t find anything wrong with Jing-wei, or they said that he was too little to be examined and diagnosed,\u201d said Li. In desperation, she and her daughter-in-law, following a suggestion, took a southbound train to the Mennonite Christian Hospital in Hualien, eastern Taiwan. It was there that eight-month-old Jing-wei finally received a definitive diagnosis: spinal muscular atrophy (SMA), a rare disease. Li finally knew what was wrong with her grandson. Well, sort of.<\/p><p>\u201cThe doctor said that Jing-wei\u2019s problem was the result of defective chromosomes,\u201d Li recalled, \u201cthat his \u2018soft skeleton\u2019 disease was congenital. I didn\u2019t understand a word of it.\u201d The only question she asked the doctor was \u201cHow long will my grandson live?\u201d The doctor told her bluntly that there was no effective therapy for the disease, and that those who had it lived, on average, only into their teens.<\/p><p>Li was devastated by the bleak prognosis. What could she do? With no cure to pursue, the doctor recommended that the only thing that she could do was to keep him healthy in order to lower the risk of complications. He also informed Li that Jing-wei\u2019s body would become more and more distorted as he grew older, squeezing his organs to one side of his body. It would then become especially important to take good care of his respiratory system.<\/p><p>Though Li could now see the situation more clearly and know how to care for her grandson, it was still all extremely hard to take. \u201cI was very sad when the doctor told me the facts,\u201d she said.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-55857781 elementor-section-full_width elementor-reverse-mobile elementor-section-height-default elementor-section-height-default\" data-id=\"55857781\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-3f297cf3\" data-id=\"3f297cf3\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-7843bb36 elementor-widget elementor-widget-text-editor\" data-id=\"7843bb36\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Li Mei-hua carefully adjusts the angle of the water bottle so that Jing-wei can drink from it more smoothly. To her, taking care of her grandson is not hard work. Her only hope is that he will remain safe and sound and healthy.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-10d1a0a1 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"10d1a0a1\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-6b2e19a0\" data-id=\"6b2e19a0\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-142ad5ab elementor-widget elementor-widget-image\" data-id=\"142ad5ab\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"960\" height=\"1440\" src=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02420-\u54f2\u4fee.jpg\" class=\"attachment-full size-full\" alt=\"\" loading=\"lazy\" srcset=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02420-\u54f2\u4fee.jpg 960w, https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02420-\u54f2\u4fee-200x300.jpg 200w, https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02420-\u54f2\u4fee-683x1024.jpg 683w, https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2023\/03\/SIU02420-\u54f2\u4fee-768x1152.jpg 768w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f957aaf elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"f957aaf\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-720be14\" data-id=\"720be14\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-8b7e840 elementor-widget elementor-widget-text-editor\" data-id=\"8b7e840\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<h5><strong>Grandma and grandson<\/strong><\/h5>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-76ee031 elementor-widget elementor-widget-text-editor\" data-id=\"76ee031\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Jing-wei\u2019s parents divorced when he was ten months old. His father left town afterwards to work, but stays in touch with his family via his cell phone. Li took Jing-wei under her wing and started rearing him with her husband. She gave him the best care she could. Though she was still sad about her grandson\u2019s condition, she knew that life had to go on.<\/p><p>Spinal muscular atrophy occurs in one of every 10,000 births. It is an autosomal recessive genetic disorder. With SMA, the patient\u2019s anterior horn cells (motor neurons) in the spinal cord progressively degenerate. Muscular atrophy and weakness ensue. SMA is divided into three types based on the age of onset and severity of the disease. Jing-wei is a type 2 sufferer, given the extreme severity of his condition.<\/p><p>Jing-wei could sit by himself when he was very young\u2014though even that was difficult\u2014but his body began to shift a little to one side by the time he started elementary school. Once this started, he could no longer sit up by himself. Li ordered corrective clothing for him to slow the rate of deformation, but it was very expensive: 9,000 Taiwanese dollars (US$300) per item, a big sum for the family, especially more than a decade ago. \u201cWe didn\u2019t know at the time that we could apply for a subsidy or for reimbursement from the National Health Insurance program,\u201d she said. \u201cMy husband and I had to borrow money to pay for it.\u201d<\/p><p>When Jing-wei was due to start elementary school, Li became concerned that he might be bullied, discriminated against, or beaten up by other kids at school. She even considered not letting him go to school, just to protect him. She only changed her mind when the special ed director at the school paid a home visit and promised that he would never allow Jing-wei to be bullied at school.<\/p><p>Jing-wei, now a sunny, upbeat college student, hasn\u2019t always been that way. For a time in elementary school, he felt gloomy and inferior. His grandmother worried that if he remained that way, he would make himself unwelcome. Who wanted to be close to someone who always wore a frown? \u201cI told him at the time to smile at everyone, whether they were his teachers or classmates,\u201d Li said. Fortunately, Jing-wei heeded her advice and started to smile more, which gradually changed him from the inside and turned him into the optimistic, cheerful person that he is today.<\/p><p>Li told us that by third grade Jing-wei still couldn\u2019t write his own name well. \u201cHow could his penmanship be so poor?\u201d she remembers thinking to herself. Only later did she find the answer to her own question: his hands had started to deform. The deformity of his fingers and wrists intensified with time. He was still able to write with a pen and eat with a spoon before high school, but after that, he had to use a computer to take the place of handwriting.<\/p><p>Li is grateful to the many people who extended a helping hand to Jing-wei throughout his years as a student. \u201cHe wasn\u2019t interested in school at all before seventh grade,\u201d Li said, but good teachers turned him around. One of Jing-wei\u2019s teachers once said to Li, \u201cGrandma, you must let Jing-wei continue going to school. He has a normal intellectual capacity, and he\u2019ll work hard if he really wants to go to college.\u201d It was this type of guidance and encouragement from teachers along the way that sparked Jing-wei\u2019s love of learning. They inspired him to study hard and discover his purpose in life.<\/p><p>Li especially cited those teachers that made the biggest impact in his education: Teachers Li and Guo and Directors Wu and Jian in Jing-wei\u2019s junior and senior high schools, and Teacher Chen in college. Li will not for a moment forget the warmth and patience they have shown her grandson.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-79a1bc14 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"79a1bc14\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-no\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-3e5dfd6b\" data-id=\"3e5dfd6b\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-66a9f977 elementor-widget elementor-widget-text-editor\" data-id=\"66a9f977\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<h5><strong>She is the center of his world, and he of hers<\/strong><\/h5>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-29167bf0 elementor-widget elementor-widget-text-editor\" data-id=\"29167bf0\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<p>Li, 67, confessed that there have been times during all those years of caring for Jing-wei that she\u2019s been upset or unhappy. Oftentimes she\u2019d become annoyed by petty things, such as why it took Jing-wei so long to finish a bottle of water. It was often over such petty things that the two of them argued.<\/p><p>Li\u2019s husband has stood by her for the last 21 years as they cared for their grandchild. They used to work together on such tasks as helping Jing-wei take a shower or lifting him out of his wheelchair into his bed, but as they got older, they learned they had to stop overexerting themselves when taking care of him. \u201cGrandpa now often feels weakness in his legs and needs to undergo regular physical therapy,\u201d Li said of her husband. Once while holding Jing-wei in his arms, he tumbled and the two of them fell flat on the floor.<\/p><p>Realizing that they were no longer young, Li and her husband applied to social welfare organizations, including the Taiwan Foundation for Rare Disorders and Taiwan Spinal Muscular Atrophy Families, for help to install a patient transfer device in their home. This would prevent similar hazardous incidents from happening again.<\/p><p>Li said that Jing-wei is particularly vulnerable to the flu or a cold when his immunity goes down. She remembers him being hospitalized almost every year as a result. He has been such a frequent patient in the hospital that all the nurses on the floor where he stays know them. Before Li retired, she often had to rush back and forth between her home, her breakfast shop, and the hospital, juggling her time taking care of her grandson, her household, and her work. That being said, she told us cheerfully, \u201cJing-wei didn\u2019t catch a single cold last year!\u201d<\/p><p>Li couldn\u2019t help feeling a sense of satisfaction as she looked at the wall covered by media reports on Jing-wei and the many certificates of achievement he had won, including that for the Presidential Education Award. \u201cIt\u2019s a good thing that he\u2019s been willing to apply himself in school,\u201d she said of her grandson, \u201cand also a good thing that I let him go to school.\u201d<\/p><p>Li\u2019s hearty character and selfless dedication have brightened Jing-wei\u2019s life. The two of them are like great partners, taking care of each other and influencing each other on the path of life. The support from his family has undoubtedly played a big part in helping Jing-wei develop a strong resilience against life\u2019s challenges. Seeing how Jing-wei is realizing his dreams step by step, including going to a university and giving inspirational talks, Li prays that he will remain safe and sound and healthy, and that he will transcend the challenges facing him and create a path all his own.<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-62a22725 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"62a22725\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-31358cdd\" data-id=\"31358cdd\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t\t\t<div class=\"elementor-element elementor-element-ebf1602 elementor-widget elementor-widget-image\" data-id=\"ebf1602\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"189\" height=\"170\" src=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/wp-content\/uploads\/sites\/8\/2022\/07\/\u82f1\u6587\u9801\u5c3e-2.png\" class=\"attachment-full size-full\" alt=\"\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Jing-wei has learned to face the challenges in his life with a smile. This optimism comes from his grandma, but it\u2026 <a class=\"text-right\" href=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/?p=39308\"><span class=\"text\">Read More <\/span><span class=\"arrow\">\u00bb<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":39211,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"pmpro_default_level":0,"_mi_skip_tracking":false,"ngg_post_thumbnail":0},"categories":[1240],"tags":[],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v20.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>The Guardian Grandma - Tzu Chi Bimonthly<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/tcmonthly.tzuchiculture.org.tw\/?p=39308\" \/>\n<meta property=\"og:locale\" content=\"zh_TW\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Guardian Grandma - Tzu Chi Bimonthly\" \/>\n<meta property=\"og:description\" content=\"Jing-wei has learned to face the challenges in his life with a smile. 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