{"id":31200,"date":"2020-01-21T00:05:10","date_gmt":"2020-01-21T06:05:10","guid":{"rendered":"https:\/\/differentdream.com\/?p=31200"},"modified":"2020-01-21T00:05:10","modified_gmt":"2020-01-21T06:05:10","slug":"my-first-ea-tef-memories","status":"publish","type":"post","link":"https:\/\/jolenephilo.com\/staging\/my-first-ea-tef-memories\/","title":{"rendered":"My First EA\/TEF Memories"},"content":{"rendered":"\n[et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”4.4.2″][et_pb_fullwidth_post_title featured_image=”off” _builder_version=”4.4.2″ title_font=”||||||||” title_text_color=”#42313A” title_font_size=”40px” meta_font_size=”14px” background_color=”#B4DBC0″ custom_padding=”50px||50px||false|false”][\/et_pb_fullwidth_post_title][\/et_pb_section][et_pb_section fb_built=”1″ specialty=”on” _builder_version=”4.4.2″ custom_padding=”0px||0px|||”][et_pb_column type=”3_4″ specialty_columns=”3″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_row_inner _builder_version=”4.4.2″][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.4.2″][et_pb_image src=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9mZWF0dXJlZF9pbWFnZSIsInNldHRpbmdzIjp7fX0=@” align=”center” _builder_version=”4.4.3″ _dynamic_attributes=”src”][\/et_pb_image][et_pb_text _builder_version=”4.9.2″]

In today’s EA\/TEF Awareness Month post, guest blogger Mary Monahan shares the story of her EA\/TEF experienced that began more than 60 years ago. Her story will bring hope to parents of younger survivors. It will also make parents and survivors alike grateful for the advances in treatment over the years.<\/em><\/p>\n

My first EA\/TEF memories are of being tied to my bed and being offered a graham cracker when I cried for my mother. In the 1950s, it was thought that staying on my back was best. Also, parents were not encouraged to stay with their children in the hospital in those days, so my early years were spent very isolated from my family.<\/p>\n

I was born before albuterol and portable breathing machines, before VACTERL was even identified as a syndrome.\u00a0I had my surgery when it was thought that surgery would cure me. All of the extra illnesses and swallowing problems, not to mention GERD, were believed to be of my own making. My adult medical care has been hit or miss due to my constant moves. I grew up long before social media and the internet connected me to the wider world of EA\/TEF survivors. Now that I see what others are going through, I am still astounded at my luck!<\/p>\n

To compound the issue, our family life was always chaotic. Any one thing could topple the tower. Our extended family lived out of range, and I was the second of seven children. Both my parents worked to support their large family. Because there were so many children to care for, my special health needs didn\u2019t mean I was always specially cared for. I know what it feels like to be a mom to a child who seems to be ill all the time\u2013I\u2019ve lived both sides of the dynamic.<\/p>\n

I am writing this to reassure parents who are struggling to care for their sick children, and for those who feel guilty.\u00a0I recently turned 61. I am alive\u00a0and have lived well in spite of having been born with EA\/TEF. The combination of a bit of neglect and craziness in my early childhood has served me very well in the end. I\u2019ve climbed mountains, rafted for days on a western river, ridden a tandem bike over five of the Fourteeners\u00a0\u00a0(mountain passes over 14,000 feet hight) in Colorado.\u00a0I left my marriage after twenty years and went back to graduate school. I still get really ill from viruses, and become a hermit during flu season, but I\u2019ve adjusted to what my body demands of me. I am who I am because of how I started, and I am pretty pleased with myself, finally.<\/p>\n

My first EA\/TEF memories come from the dark ages of the condition’s treatment. \u00a0I am still here and have lived quite a normal, adventurous life. Like me, most of the EA\/TEF children born today will go on to live very normal lives. Parents, find comfort and hope in that!<\/p>\n

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up 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=”4.4.2″][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.4.2″ background_color=”#b4dbc0″ custom_padding=”20px|20px|20px|20px|false|false”][et_pb_blurb title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9hdXRob3IiLCJzZXR0aW5ncyI6eyJiZWZvcmUiOiJCeSAiLCJhZnRlciI6IiIsIm5hbWVfZm9ybWF0IjoiZGlzcGxheV9uYW1lIiwibGluayI6Im9uIiwibGlua19kZXN0aW5hdGlvbiI6ImF1dGhvcl9hcmNoaXZlIn19@” image=”http:\/\/jolenephilo.com\/staging\/wp-content\/uploads\/2020\/01\/IMG_0583.jpg” icon_placement=”left” image_max_width=”100px” content_max_width=”800px” _builder_version=”4.9.2″ _dynamic_attributes=”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” hover_enabled=”0″ 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)” locked=”off” title_text=”Mary Monahan” sticky_enabled=”0″]

Mary Monahan, pictured here as a young child with her father, is a 60+ year old EA\/TEF survivor. Her surgery was performed less than 20 years after the first successful surgical repair.\u00a0She has lived all over the US and Europe before settling down in the high desert shrub steppes of Central Washington State.\u00a0 Mom to two grown children, Mary is employed by the state of Washington to oversee toxic waste site cleanups.<\/p>[\/et_pb_blurb][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=”4.4.2″][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.4.2″][et_pb_comments _builder_version=”4.4.2″ custom_button=”on” button_text_color=”#42313A” button_bg_color=”#EBDCB2″][\/et_pb_comments][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_sidebar _builder_version=”4.4.2″][\/et_pb_sidebar][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.9.2″ use_background_color_gradient=”on” background_color_gradient_start=”#42313A” background_color_gradient_end=”#EBDCB2″ background_color_gradient_direction=”159deg” custom_padding=”0px|0px|0px|0px|false|false” border_width_all=”3px” border_color_all=”#1c1259″ saved_tabs=”all”][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” gutter_width=”1″ _builder_version=”4.9.2″ width=”100%” max_width=”100%” custom_margin=”||0px||false|false” custom_padding=”25px|0px|5px|0px|false|false”][et_pb_column type=”1_2″ module_class=”horizontal_optin_column_1″ _builder_version=”4.3.4″][et_pb_text _builder_version=”4.4.2″ 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”]

Subscribe for Updates from Jolene<\/h3>[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.3.4″][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=”4.4.2″ 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”][\/et_pb_signup][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.4.2″ custom_padding=”0px|||||”][et_pb_row _builder_version=”4.4.2″][et_pb_column type=”4_4″ _builder_version=”4.4.2″][et_pb_text _builder_version=”4.4.2″ header_font=”EB Garamond|600|||||||” header_text_color=”#B6452C” header_font_size=”50px” header_text_shadow_style=”preset1″]

Related Posts<\/h1>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.4.2″][et_pb_column type=”4_4″ _builder_version=”4.4.2″][et_pb_blog fullwidth=”off” posts_number=”3″ include_categories=”current” show_more=”on” _builder_version=”4.4.2″ 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”][\/et_pb_blog][\/et_pb_column][\/et_pb_row][\/et_pb_section]\n","protected":false},"excerpt":{"rendered":"

My First EA\/TEF Memories is the miraculous story of a woman whose survived corrective surgery in the 1950s. Her story will encourage you and make you grateful!<\/p>\n","protected":false},"author":1,"featured_media":31206,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"My\n\nMy first EA\/TEF<\/strong><\/a> memories. In today's EA\/TEF Awareness Month post, guest blogger Mary Monahan shares the story of her EA\/TEF<\/strong><\/a> experienced that began more than 60 years ago. Her story will bring hope to parents of younger survivors. It will also make parents and survivors alike grateful for the advances in treatment over the years.<\/em>\n\nMy first EA\/TEF<\/strong><\/a> memories are of being tied to my bed and being offered a graham cracker when I cried for my mother. In the 1950s, it was thought that staying on my back was best. Also, parents were not encouraged to stay with their children in the hospital in those days, so my early years were spent very isolated from my family.\n\nI was born before albuterol and portable breathing machines, before VACTERL<\/strong><\/a> was even identified as a syndrome.\u00a0<\/span>I had my surgery when it was thought that surgery would cure me. All of the extra illnesses and swallowing problems, not to mention GERD<\/strong><\/a>, were believed to be of my own making. My adult medical care has been hit or miss due to my constant moves. I grew up long before social media and the internet connected me to the wider world of EA\/TEF<\/strong><\/a> survivors. Now that I see what others are going through, I am still astounded at my luck!\n\nTo compound the issue, our family life was always chaotic. Any one thing could topple the tower. Our extended family lived out of range, and I was the second of seven children. Both my parents worked to support their large family. Because there were so many children to care for, my special health needs didn\u2019t mean I was always specially cared for. I know what it feels like to be a mom to a child who seems to be ill all the time\u2013I\u2019ve lived both sides of the dynamic.\n\nI am writing this to reassure parents who are struggling to care for their sick children, and for those who feel guilty.\u00a0<\/span>I recently turned 61. I am alive<\/em>\u00a0and have lived well in spite of having been born with EA\/TEF<\/strong><\/a>. The combination of a bit of neglect and craziness in my early childhood has served me very well in the end. I\u2019ve climbed mountains, rafted for days on a western river, ridden a tandem bike over five of the Fourteeners\u00a0\u00a0(mountain passes over 14,000 feet hight) in Colorado.\u00a0I left my marriage after twenty years and went back to graduate school. I still get really ill from viruses, and become a hermit during flu season, but I\u2019ve adjusted to what my body demands of me. I am who I am because of how I started, and I am pretty pleased with myself, finally.\n\nMy first EA\/TEF<\/strong><\/a> memories come from the dark ages of the condition's treatment. \u00a0I am still here and have lived quite a normal, adventurous life. Like me, most of the EA\/TEF<\/strong><\/a> children born today will go on to live very normal lives. Parents, find comfort and hope in that!\n\n\"\"Mary Monahan, pictured here as a young child with her father, is a 60+ year old EA\/TEF<\/strong><\/a> survivor. Her surgery was performed less than 20 years after the first successful surgical repair.\u00a0<\/span>She has lived all over the US and Europe before settling down in the high desert shrub steppes of Central Washington State.\u00a0 <\/span>Mom to two grown children, Mary is employed by the state of Washington to oversee toxic waste site cleanups.\u00a0<\/span><\/em>\n\nDo you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up at the bottom of this page.<\/em>","_et_gb_content_width":"2880","footnotes":""},"categories":[3559,3615],"tags":[4000,3994],"class_list":["post-31200","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-different-dream","category-encouragement","tag-ea-tef-awareness-month","tag-gerd"],"yoast_head":"\nMy First EA\/TEF Memories - Jolene Philo Staging<\/title>\n<meta name=\"description\" content=\"My First EA\/TEF Memories is the miraculous story of a woman whose survived corrective surgery in the 1950s. 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