{"id":31182,"date":"2020-01-14T00:05:40","date_gmt":"2020-01-14T06:05:40","guid":{"rendered":"https:\/\/differentdream.com\/?p=31182"},"modified":"2020-01-14T00:05:40","modified_gmt":"2020-01-14T06:05:40","slug":"the-emotions-of-an-ea-tef-parenting-life","status":"publish","type":"post","link":"https:\/\/jolenephilo.com\/staging\/the-emotions-of-an-ea-tef-parenting-life\/","title":{"rendered":"The Emotions of an EA\/TEF Parenting Life"},"content":{"rendered":"\n\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″ hover_enabled=”0″ sticky_enabled=”0″]

The emotions of an EA\/TEF<\/strong><\/a> parenting life run a gambit of emotions. Emily Duckworth, today’s EA\/TEF<\/strong> <\/a>Awareness Month guest blogger describes how she hangs onto hope when despair creeps in.<\/em><\/p>\n

Here we go again. Yet another no call, no show with a scheduled interview for a home health nurse for Colt. I am angry and I can\u2019t explain it, but I am also hurt. He deserves to have such an amazing nurse. I look at our son and feel such a mixture of guilt, fear, pride, and joy. These are the emotions of an EA\/TEF<\/strong><\/a> parenting life.<\/p>\n

There is guilt daily.<\/strong><\/em><\/p>\n

Wondering what else can I be doing as his Mother? As his advocate? Guilt for the time taken away from his sister when he is in sensory overload and just needs more. Guilt for momentarily losing sight of how far we have come and regressing into the longing for what might have been. The guilt of screaming, \u201cWhy him? Why us? Why me?\u201d<\/p>\n

I feel fear intensely.<\/em><\/strong><\/p>\n

I think about the what ifs. When I think of what he felt birth, what he feels now. Coming early, struggling to breathe, struggling to survive. Continuous appointments, poking, prodding. Fear of where this condition may take us. The fear of losing a child. There are moments of fear so pulling, grating, consuming that I can\u2019t help but release it in a silent scream. Pleading, gripping my chest, losing breath, and feeling a grief I never knew existed.<\/p>\n

Then comes joy.<\/strong><\/em><\/p>\n

It floods into the darkness. The moments my son truly engages with me and I know<\/em> he understands. He shows me he is happy regardless of his anomalies, struggles, and pain. The complete joy of seeing him with his sister and their mutual adoration. Joy in every smile, every laugh. Joy in all of his firsts, his own excitement, and his daring enthusiasm in doing the things he has been told not to do. We find joy in his past, present, and future. We know we are lucky. We know we are blessed. We are thankful.<\/p>\n

We feel pride.<\/strong><\/em><\/p>\n

We are proud of everything he has overcome in such a small amount of time. Pride for how hard he works to try and reach milestones. His struggles to breathe, eat, and talk. He takes his struggles in stride, and though we have terrible lows, we have incredible highs.<\/p>\n

We will continue to feel so much more than we knew we could.<\/strong><\/em><\/p>\n

But when we lose sight due to guilt, fear, and negativity, we revert back to our need for joy, for hope.<\/strong><\/em>\u00a0The emotions of an EA\/TEF<\/strong><\/a> parenting life are hard. This life is hard. So hard. But we get to witness a miracle daily and we are so proud of who our son is, who our daughter is, and who we have become as a family of our special needs warrior.\u00a0<\/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\/Photo-1.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=”Photo 1″ sticky_enabled=”0″]

I am Emily Duckworth, wife of Cameron Duckworth and the proud Mama of Ayla, 10 and Colt, 2. Our son Colt was born 8 weeks prematurely. Although I had always felt something was off with my pregnancy, we had never expected the diagnosis of esophageal atresia with a tracheoesophageal fistula (EA\/TEF)<\/strong><\/a>. Colt endured 5 surgeries, including the insertion of a tracheostomy tube<\/strong><\/a> to breathe due to the lasting effects of tracheomalacia<\/strong><\/a>.\u00a0<\/em><\/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”]

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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\n","protected":false},"excerpt":{"rendered":"

The emotions of an EA\/TEF parenting life are all over the place. Guest blogger Emily Duckworth explains how she finds joy when negative emotions creep in.<\/p>\n","protected":false},"author":1,"featured_media":31186,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"The\n\nThe emotions of an EA\/TEF<\/strong><\/a> parenting life run a gambit of emotions. Emily Duckworth, today's EA\/TEF<\/strong> <\/a>Awareness Month guest blogger describes how she hangs onto hope when despair creeps in.<\/em>\n\nHere we go again. Yet another no call, no show with a scheduled interview for a home health nurse for Colt. I am angry and I can\u2019t explain it, but I am also hurt. He deserves to have such an amazing nurse. I look at our son and feel such a mixture of guilt, fear, pride, and joy. These are the emotions of an EA\/TEF<\/strong><\/a> parenting life.\n\nThere is guilt daily.<\/strong><\/em>\n\nWondering what else can I be doing as his Mother? As his advocate? Guilt for the time taken away from his sister when he is in sensory overload and just needs more. Guilt for momentarily losing sight of how far we have come and regressing into the longing for what might have been. The guilt of screaming, \u201cWhy him? Why us? Why me?\u201d\n\nI feel fear intensely.<\/em><\/strong>\n\nI think about the what ifs. When I think of what he felt birth, what he feels now. Coming early, struggling to breathe, struggling to survive. Continuous appointments, poking, prodding. Fear of where this condition may take us. The fear of losing a child. There are moments of fear so pulling, grating, consuming that I can\u2019t help but release it in a silent scream. Pleading, gripping my chest, losing breath, and feeling a grief I never knew existed.\n\nThen comes joy.<\/strong><\/em>\n\nIt floods into the darkness. The moments my son truly engages with me and I know<\/em> he understands. He shows me he is happy regardless of his anomalies, struggles, and pain. The complete joy of seeing him with his sister and their mutual adoration. Joy in every smile, every laugh. Joy in all of his firsts, his own excitement, and his daring enthusiasm in doing the things he has been told not to do. We find joy in his past, present, and future. We know we are lucky. We know we are blessed. We are thankful.\n\nWe feel pride.<\/strong><\/em>\n\nWe are proud of everything he has overcome in such a small amount of time. Pride for how hard he works to try and reach milestones. His struggles to breathe, eat, and talk. He takes his struggles in stride, and though we have terrible lows, we have incredible highs.\n\nWe will continue to feel so much more than we knew we could.<\/strong><\/em>\n\nBut when we lose sight due to guilt, fear, and negativity, we revert back to our need for joy, for hope.<\/strong><\/em>\u00a0The emotions of an EA\/TEF<\/strong><\/a> parenting life are hard. This life is hard. So hard. But we get to witness a miracle daily and we are so proud of who our son is, who our daughter is, and who we have become as a family of our special needs warrior.\n\n\"TheI am Emily Duckworth, wife of Cameron Duckworth and the proud Mama of Ayla, 10 and Colt, 2. Our son Colt was born 8 weeks prematurely. Although I had always felt something was off with my pregnancy, we had never expected the diagnosis of esophageal atresia with a tracheoesophageal fistula (EA\/TEF)<\/strong><\/a>. Colt endured 5 surgeries, including the insertion of a tracheostomy tube<\/strong><\/a> to breathe due to the lasting effects of tracheomalacia<\/strong><\/a>. \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":[3559,1],"tags":[3067,541,583,667,3850,4111],"class_list":["post-31182","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-different-dream","category-uncategorized","tag-fear","tag-guilt","tag-hope","tag-joy","tag-tracheomalacia","tag-tracheostomy-tube"],"yoast_head":"\nThe Emotions of an EA\/TEF Parenting Life - Jolene Philo Staging<\/title>\n<meta name=\"description\" content=\"The emotions of an EA\/TEF parenting life are all over the place. 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