{"id":413,"date":"2013-08-01T16:38:04","date_gmt":"2013-08-01T20:38:04","guid":{"rendered":"https:\/\/news.med.virginia.edu\/kidsmatter\/?p=413"},"modified":"2013-08-01T16:38:50","modified_gmt":"2013-08-01T20:38:50","slug":"tay-sachs-mothers-journey","status":"publish","type":"post","link":"https:\/\/news.med.virginia.edu\/kidsmatter\/tay-sachs-mothers-journey\/","title":{"rendered":"Tay-Sachs and a Mother\u2019s Journey"},"content":{"rendered":"<p><i>The Still Point of The Turning World: A Mother\u2019s Story<br \/>\n<\/i>Emily Rapp, Penguin USA, 2013<\/p>\n<p><i>Leaves Falling Gently: Living Fully with Serious and Life-Limiting Illness through Mindfulness, Compassion, and Connectedness<br \/>\nS<\/i>usan Bauer-Wu, New Harbinger Publications, 2011<\/p>\n<p><i>Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death<br \/>\n<\/i>Joan Halifax, Shambhala Publications, 2009<\/p>\n<p><a href=\"https:\/\/news.med.virginia.edu\/kidsmatter\/files\/2013\/08\/cover-still-point.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-416\" style=\"margin-left: 8px;margin-right: 8px\" alt=\"book cover\" src=\"https:\/\/news.med.virginia.edu\/kidsmatter\/files\/2013\/08\/cover-still-point.jpg\" width=\"150\" height=\"228\" \/><\/a>Emily Rapp\u2019s new book, <i>Still Point of a Turning World,<\/i> is the chronicle of a her heroic quest to discover the \u201cgap-ridden myth, the idiosyncratic narrative\u201d defining her son, Ronan\u2019s, all too brief life with Tay-Sachs. It is also the story of a mother\u2019s grief, told with a poignancy that captures both the challenges of daily life and those quiet moments of arresting insight that appear as jewels in the fog. Mostly, this \u201cis a love story, which, like all great love stories, is ultimately a story of loss.\u201d<\/p>\n<p>The book opens with the gripping account of a routine trip to the ophthalmologist. Ronan\u2019s pediatrician suggested the consultation due to a developmental delay. Imagine the unsettling surprise of this busy ophthalmologist when he scans Ronan\u2019s retina and sees the rare, pathognomonic, cherry-red spots of Tay-Sachs. As he stumbles with what to say, Emily Rapp knows immediately that it\u2019s bad. She sees it in his face. She senses the sorrow in his voice. Before he ever utters the words of diagnosis, she knows her life is about to change forever. What follows is a chaos of emotion and disbelief. Rapp so clearly describes her memory of this moment that I felt myself wanting to step into the room and be helpful.<\/p>\n<p>The chapters that follow spread out over the next year.\u00a0 Daily life offers Rapp constant opportunities to reflect on the winding path of grief and her language is often arresting in its apt and poetic description. When imagining the loss of Ronan as a physical presence, she contemplates gathering up the collected objects of \u201chis magic shelf\u201d, and contemplates the absence of his body next to hers. Losing things matters, she writes.\u00a0 \u201cThings count\u2026. Things make people\u2014and memories\u2014accessible, digestible, permanent feeling, like some kind of marking, like a portable, off-body tattoo.\u201d<\/p>\n<p>There are warm moments of hope as well. The connections that are developed with other parents of children with Tay-Sachs, whom she calls her Dragon Moms, seem essential to her coping. Emily\u2019s workout partners at the gym create a Ronan-a-thon to raise money for his care. They also provide a steadying presence without undue conversation. And finally, the time spent at Upaya with Roshi Joan Halifax for the \u201cBeing with Dying\u201d retreat grounds her with a renewed strength.<\/p>\n<p>It is the mindfulness and deep acceptance that emerge from Upaya that bring the book around to its closure. We are able to see, in retrospect, that being in the present moment with Ronan has been what has created much of Emily\u2019s joy and memory and meaning.\u00a0 She learns at Upaya that being fully present with the dying requires \u201ca strong back and a soft front.\u201d<\/p>\n<p><a href=\"https:\/\/news.med.virginia.edu\/kidsmatter\/files\/2013\/08\/cover-being-with-dying.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-417\" style=\"margin-left: 8px;margin-right: 8px\" alt=\"book cover\" src=\"https:\/\/news.med.virginia.edu\/kidsmatter\/files\/2013\/08\/cover-being-with-dying.jpg\" width=\"150\" height=\"225\" \/><\/a>In her book <i>Being with Dying<\/i>, Joan Halifax shares 19 lessons with 19 meditations gleaned from decades as a Zen priest. Roshi Joan offers spiritual care and presence at the end of life to those in and around her community. She also leads transformative retreats for caregivers at the Upaya Zen Center in Santa Fe, New Mexico. Through the Compassionate Care Initiative at the School of Nursing, Dean Dorrie Fountain has enabled dozens of UVa faculty from medicine and nursing to attend <a href=\"http:\/\/www.upaya.org\/programs\/event.php?id=885\">the annual \u201cBeing with Dying\u201d retreat at Upaya<\/a>. The hope is to \u201ccultivate compassion and fearlessness in the presence of death\u201d through mindfulness meditation and practice.<\/p>\n<p><a href=\"https:\/\/news.med.virginia.edu\/kidsmatter\/files\/2013\/08\/cover-leaves-falling-gently.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-418\" style=\"margin-left: 8px;margin-right: 8px\" alt=\"book cover\" src=\"https:\/\/news.med.virginia.edu\/kidsmatter\/files\/2013\/08\/cover-leaves-falling-gently.jpg\" width=\"150\" height=\"200\" \/><\/a><a href=\"http:\/\/www.nursing.virginia.edu\/people\/faculty\/sb6vk\">Susan Bauer-Wu<\/a>, the new Tussi and John Kluge Endowed Professor in Contemplative End of Life Care in the School of Nursing at UVa, offers a similar approach for those who wish to live fully with serious and life-limiting illness. In her book <i>Leaves Falling Gently<\/i>, she explores mindfulness, compassion, and connection using scientific evidence, stories and reflective practice.\u00a0 The meditation exercises are useful to everyone, and presented as particularly helpful to folks like Emily Rapp who live day-to-day with life-limiting illness and its imminent losses.<\/p>\n<p><i>The Still Point of the Turning World<\/i> is a courageous tale of love. Peppered with luminous poems and references to literature, Rapp\u2019s book moves the reader outside her personal grief. Although we are drawn into the heartbreak of her story, we can see beyond it.\u00a0 In the final two pages of the last chapter, Emily Rapp shares a story, that she has created for herself, of life after Ronan. She leaves us with a richly drawn, lingering image of being present to an eternal love.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The Still Point of The Turning World: A Mother\u2019s Story Emily Rapp, Penguin USA, 2013 Leaves Falling Gently: Living Fully with Serious and Life-Limiting Illness through Mindfulness, Compassion, and Connectedness Susan Bauer-Wu, New Harbinger Publications, 2011 Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death Joan Halifax, Shambhala Publications, 2009 Emily Rapp\u2019s [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":416,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[6],"tags":[50,48,51],"class_list":["post-413","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-features","tag-book-review","tag-jlp3z","tag-sb6vk"],"acf":false,"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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