{"id":43913,"date":"2012-10-10T07:00:00","date_gmt":"2012-10-10T12:00:00","guid":{"rendered":"http:\/\/f06.70c.myftpupload.com\/?p=7062"},"modified":"2012-10-10T07:00:00","modified_gmt":"2012-10-10T12:00:00","slug":"medically-fragile-children-practical-parenting-help","status":"publish","type":"post","link":"https:\/\/jolenephilo.com\/staging\/medically-fragile-children-practical-parenting-help\/","title":{"rendered":"Medically Fragile Children: Practical Parenting Help"},"content":{"rendered":"\n[et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”4.16″ global_colors_info=”{}”][et_pb_fullwidth_post_title featured_image=”off” _builder_version=”4.16″ title_font=”||||||||” title_text_color=”#42313A” title_font_size=”40px” meta_font_size=”14px” background_color=”#B4DBC0″ custom_padding=”50px||50px||false|false” global_colors_info=”{}”][\/et_pb_fullwidth_post_title][\/et_pb_section][et_pb_section fb_built=”1″ specialty=”on” _builder_version=”4.16″ custom_padding=”0px||0px|||” global_colors_info=”{}”][et_pb_column type=”3_4″ specialty_columns=”3″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_row_inner _builder_version=”4.16″ global_colors_info=”{}”][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_image src=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9mZWF0dXJlZF9pbWFnZSIsInNldHRpbmdzIjp7fX0=@” align=”center” _builder_version=”4.16″ _dynamic_attributes=”src” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.22.2″ hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]

Medically fragile children need parents with a unique set of skills. Because these skills aren’t taught in parenting classes or addressed in parenting books, dads and moms with children who have critical medical needs are forced to scramble to find resources while they’re still coming to terms with an unexpected diagnosis. My book, Different Dream Parenting<\/em><\/a><\/span>, has several chapters about parenting kids with medical special needs, but a new book by Margaret Meder deals exclusively with this subset of medically fragile special needs children<\/a><\/span>.<\/p>\n

Meet Margaret Meder<\/h3>\n

Margaret Meder and her husband Randy are parents to Jonathan and Evan. Evan, their second child, was diagnosed with Apert syndrome<\/a><\/span> shortly after his birth in June of 2004. Their newborn spent 4 weeks in NICU and was hospitalized numerous other times because of respiratory issues and corrective surgeries. Margaret looked for books to help her family on their parenting journey but found none. Once her son’s health stabilized several years later, she wrote a book to share what she learned with other families in similar situations.<\/p>\n

Check Out Margaret’s Book<\/h3>\n

Margaret’s book about parenting kids who are medically fragile is called Uncommon Beauty: Crisis Parenting from Day One<\/span><\/a>. It contains over 100 tips covering diverse topics such as dealing with insurance companies, setting up a schedule, advocating for your child, and staying positive. Each tip includes current information and an excerpt from Meder’s journal when Evan was very young. The juxtaposition of past and present shows Margaret’s initial identification of new problems and how she found solutions.<\/p>\n

Her advice provides practical examples, as one about how to prepare for the arrival of paramedics and an ambulance shows. Meder suggests creating a vital information sheet – long before a crisis, of course. A five bullet point list outlines what the sheet should contain. On the same page, Meder explains what to pack in an emergency visit backpack and how to tailor the contents to your child’s specific medical condition.<\/p>\n

Advice About Medically Fragile Children<\/h3>\n

Meder’s book is a valuable resource to parents of kids who are medically fragile, and I recommend it. You might also like to visit her website, www.uncommonbeauty-crisisparenting.com<\/a><\/span>. But before you go visit Margaret’s site, perhaps you would like to share a tip or two you’ve discovered as the parent of a child who is medically fragile. If so, leave a comment below.<\/p>\n

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.<\/em><\/p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=”4.16″ global_colors_info=”{}”][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.16″ background_color=”#b4dbc0″ custom_padding=”20px|20px|20px|20px|false|false” global_colors_info=”{}”][et_pb_blurb title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9hdXRob3IiLCJzZXR0aW5ncyI6eyJiZWZvcmUiOiJCeSAiLCJhZnRlciI6IiIsIm5hbWVfZm9ybWF0IjoiZGlzcGxheV9uYW1lIiwibGluayI6Im9uIiwibGlua19kZXN0aW5hdGlvbiI6ImF1dGhvcl9hcmNoaXZlIn19@” image=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9hdXRob3JfcHJvZmlsZV9waWN0dXJlIiwic2V0dGluZ3MiOnt9fQ==@” icon_placement=”left” image_icon_width=”100px” content_max_width=”800px” _builder_version=”4.16″ _dynamic_attributes=”image,title” header_font=”Rubik|500|||||||” header_text_color=”#44465f” header_font_size=”14px” header_line_height=”32px” body_font=”Rubik||||||||” body_text_color=”rgba(0,6,69,0.6)” body_link_text_color=”#ffffff” custom_css_main_element=”font-weight: 400;” border_radii_image=”on|100px|100px|100px|100px” border_color_all_image=”#ffffff” box_shadow_style_image=”preset1″ box_shadow_vertical_image=”20px” box_shadow_blur_image=”40px” box_shadow_color_image=”rgba(68,70,95,0.27)” image_max_width=”100px” locked=”off” global_colors_info=”{}”]

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love Languages\u00ae for Parents Raising Children with Disabilities<\/a>, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!<\/a>, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.<\/p>[\/et_pb_blurb][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=”4.16″ global_colors_info=”{}”][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_comments _builder_version=”4.16″ custom_button=”on” button_text_color=”#42313A” button_bg_color=”#EBDCB2″ global_colors_info=”{}”][\/et_pb_comments][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_sidebar _builder_version=”4.16″ global_colors_info=”{}”][\/et_pb_sidebar][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ use_background_color_gradient=”on” background_color_gradient_direction=”159deg” background_color_gradient_stops=”#42313A 0%|#EBDCB2 100%” background_color_gradient_start=”#42313A” background_color_gradient_end=”#EBDCB2″ custom_padding=”0px|0px|0px|0px|false|false” border_width_all=”3px” border_color_all=”#1c1259″ saved_tabs=”all” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” gutter_width=”1″ _builder_version=”4.16″ width=”100%” max_width=”100%” custom_margin=”||0px||false|false” custom_padding=”25px|0px|5px|0px|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ module_class=”horizontal_optin_column_1″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ header_text_align=”right” header_text_color=”#45107a” header_3_font=”Dancing Script|700|||||||” header_3_text_align=”center” header_3_text_color=”#B4DBC0″ header_3_font_size=”45px” custom_margin=”10px||||false|false” custom_padding=”||||false|false” global_colors_info=”{}”]

Subscribe for Updates from Jolene<\/h3>[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_signup mailchimp_list=”JolenePhilo|89f719a52b” layout=”bottom_top” first_name_fullwidth=”off” last_name_field=”off” email_fullwidth=”off” module_class=”custom_emailoptin” _builder_version=”4.16″ form_field_focus_background_color=”#42313A” background_enable_color=”off” custom_button=”on” button_text_size=”16px” button_text_color=”#42313A” button_bg_color=”#B4DBC0″ button_border_width=”2px” button_border_radius=”0px” button_font=”|||on|||||” button_use_icon=”off” button_custom_margin=”5px||||false|false” button_custom_padding=”0px|0px|0px|0px|false|false” custom_padding=”0px|0px|0px|0px|false|false” border_width_all_fields=”2px” global_colors_info=”{}”][\/et_pb_signup][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.16″ custom_padding=”0px|||||” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_text _builder_version=”4.16″ header_font=”EB Garamond|600|||||||” header_text_color=”#B6452C” header_font_size=”50px” header_text_shadow_style=”preset1″ global_colors_info=”{}”]

Related Posts<\/h1>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.16″ global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ global_colors_info=”{}”][et_pb_blog fullwidth=”off” posts_number=”3″ include_categories=”current” show_more=”on” _builder_version=”4.16″ header_text_color=”#42313A” meta_font=”||on||||||” read_more_font=”|||on|||||” read_more_text_color=”#B6452C” read_more_font_size=”12px” pagination_text_color=”#B6452C” pagination_font_size=”20px” global_colors_info=”{}”][\/et_pb_blog][\/et_pb_column][\/et_pb_row][\/et_pb_section]\n","protected":false},"excerpt":{"rendered":"

Medically fragile children need parents with a unique skills. Margaret Meder’s book Uncommon Beauty: Crisis Parenting from Day One teaches parents those skills.<\/p>\n","protected":false},"author":1,"featured_media":43468,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"Medically<\/a>\n\nMedically fragile children need parents with a unique set of skills. Because these skills aren't taught in parenting classes or addressed in parenting books, dads and moms with children who have critical medical needs are forced to scramble to find resources while they're still coming to terms with an unexpected diagnosis. My book, Different Dream Parenting<\/em><\/a>, has several chapters about parenting kids with medical special needs, but a new book by Margaret Meder deals exclusively with this subset of medically fragile special needs children<\/a>.\n

Meet Margaret Meder<\/h3>\nMargaret Meder and her husband Randy are parents to Jonathan and Evan. Evan, their second child, was diagnosed with Apert syndrome<\/a> shortly after his birth in June of 2004. Their newborn spent 4 weeks in NICU and was hospitalized numerous other times because of respiratory issues and corrective surgeries. Margaret looked for books to help her family on their parenting journey, but found none. Once her son's health stabilized several years later, she wrote a book to share what she learned with other families in similar situations.\n

Check Out Margaret's Book<\/h3>\nMargaret's book about parenting kids who are medically fragile is called Uncommon Beauty: Crisis Parenting from Day One<\/a>. It contains over 100 tips covering diverse topics such as dealing with insurance companies, setting up a schedule, advocating for your child, and staying positive. Each tip includes current information and an excerpt from Meder's journal when Evan was very young. The juxtaposition of past and present shows Margaret's initial identification of new problems and how she found solutions.\n\nHer advice provides practical examples, as one about how to prepare for the arrival of paramedics and an ambulance shows. Meder suggests creating a vital information sheet - long before a crisis, of course. A five bullet point list outlines what the sheet should contain. On the same page, Meder explains what to pack in an emergency visit backpack and how to tailor the contents to your child's specific medical condition.\n

Advice About Medically Fragile Children<\/h3>\nMeder's book is a valuable resource to parents of kids who are medically fragile, and I recommend it. You might also like to visit her website, www.uncommonbeautycrisisparenting.com<\/a>. But before you go visit Margaret's site, perhaps you would like to share a tip or two you've discovered as the parent of a child who is medically fragile. If so, leave a comment below.\n\nDo you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.<\/em>","_et_gb_content_width":"2880","footnotes":""},"categories":[3596,3559,3583],"tags":[3754,3755,3756,3757],"class_list":["post-43913","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spiritual-books-and-resources","category-different-dream","category-spiritual-support","tag-aperts-syndrome","tag-margaret-meder","tag-medically-fragile-chidren","tag-uncommon-beauty"],"yoast_head":"\nMedically Fragile Children: Practical Parenting Help<\/title>\n<meta name=\"description\" content=\"Medically fragile children need parents with a unique skills. 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