{"id":43931,"date":"2012-11-15T07:00:10","date_gmt":"2012-11-15T13:00:10","guid":{"rendered":"http:\/\/f06.70c.myftpupload.com\/?p=7299"},"modified":"2012-11-15T07:00:10","modified_gmt":"2012-11-15T13:00:10","slug":"medically-fragile-childs-perfect-ending","status":"publish","type":"post","link":"https:\/\/jolenephilo.com\/staging\/medically-fragile-childs-perfect-ending\/","title":{"rendered":"A Medically Fragile Child&#8217;s Perfect Ending"},"content":{"rendered":"\n[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; _builder_version=&#8221;4.4.2&#8243;][et_pb_fullwidth_post_title featured_image=&#8221;off&#8221; _builder_version=&#8221;4.4.2&#8243; title_font=&#8221;||||||||&#8221; title_text_color=&#8221;#42313A&#8221; title_font_size=&#8221;40px&#8221; meta_font_size=&#8221;14px&#8221; background_color=&#8221;#B4DBC0&#8243; custom_padding=&#8221;50px||50px||false|false&#8221;][\/et_pb_fullwidth_post_title][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; specialty=&#8221;on&#8221; _builder_version=&#8221;4.4.2&#8243; custom_padding=&#8221;0px||0px|||&#8221;][et_pb_column type=&#8221;3_4&#8243; specialty_columns=&#8221;3&#8243; _builder_version=&#8221;3.25&#8243; custom_padding=&#8221;|||&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_row_inner _builder_version=&#8221;4.4.2&#8243;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.4.2&#8243;][et_pb_image src=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9mZWF0dXJlZF9pbWFnZSIsInNldHRpbmdzIjp7fX0=@&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.4.3&#8243; _dynamic_attributes=&#8221;src&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.9.4&#8243; custom_padding=&#8221;5px||36px|||&#8221;]<p>I&#8217;d like to introduce you to Stephanie Ballard, a new <a href=\"http:\/\/differentdream.com\/meet-the-guest-bloggers\/\">Different Dream guest blogger<\/a>. You may recall meeting her in September, when she shared the poem she wrote for her son&#8217;s teacher. Reader response to that post led to an invitation to guest blog on a regular basis. Today, she describes how she longs to write the perfect ending to her medically fragile son&#8217;s story.<\/p>\n<h3 style=\"text-align: center;\">How I&#8217;d Like to Write Your Story<\/h3>\n<p>I can hear the gentle patter of his footsteps scurrying across the carpet as he dashes into my bedroom in the early morning hours. &#8220;Good morning mama,&#8221; he whispers while climbing into the bed beside me.<\/p>\n<p>&#8220;I&#8217;m awake,&#8221; I answer sleepily, as he wraps his tiny fingers into my hair. &#8220;Guess who loves you?&#8221; he asks.<\/p>\n<p>I find myself smiling from under the covers. This has become our ritual-a game that belongs only to us. I relish these morning moments&#8230;as I am able to connect with my son without all of the interruptions and worries that I know we will face as the day wears on.<\/p>\n<p>No one could have prepared me for life with a medically fragile child. It is a day by day learning lesson full of challenges and triumphs, but my son is my greatest teacher. &#8220;Hmm&#8221;&#8230;I say in response to his question. &#8220;Does Braeden love me?&#8221;<\/p>\n<p>He giggles in response, and nods his head up and down emphatically.<\/p>\n<p>&#8220;Guess who I love?&#8221; I ask in response, as I tumble out from under my warm comforter.<\/p>\n<p>He silently taps his finger under his chin, as if in thought mode and then says, &#8220;Coffee?&#8221; I laugh out loud, knowing that life is full of uncertainties&#8230;but I am thankful for this moment in time.<\/p>\n<h4 style=\"text-align: center;\">Your Story<\/h4>\n<p style=\"text-align: center;\">If I could write your story son&#8230;<br \/>(Oh how I wish I could)<br \/>I&#8217;d pen for you a journey<br \/>That held nothing but good.<\/p>\n<p style=\"text-align: center;\">Wouldn&#8217;t it be perfect<br \/>If that job belonged to me?<br \/>I think I&#8217;d change a thing or two<br \/>While writing your story.<\/p>\n<p style=\"text-align: center;\">I&#8217;d write of lasting happiness<br \/>The storms would stay at bay<br \/>I\u2019d write your story carefully<br \/>I&#8217;d have so much to say.<\/p>\n<p style=\"text-align: center;\">You&#8217;d know not of a hospital<br \/>or days in ICU<br \/>You&#8217;d only know of simple things<br \/>Like other children do.<\/p>\n<p style=\"text-align: center;\">The sun would rise&#8230;Yes everyday<br \/>and shine to make you smile<br \/>You&#8217;d never know a day of pain<br \/>You&#8217;d never face a trial.<\/p>\n<p style=\"text-align: center;\">You&#8217;d dance to music all your own<br \/>While watching Sesame Street<br \/>I&#8217;d tuck you into bed each night<br \/>and life would be complete.<\/p>\n<p style=\"text-align: center;\">I&#8217;d write of picnics in the park<br \/>and winters in the snow<br \/>I&#8217;d write of laughter, joy and love<br \/>I&#8217;d sit and watch you grow.<\/p>\n<p style=\"text-align: center;\">I&#8217;d proofread till my eyes grew tired<br \/>Each line and paragraph<br \/>and let my pen fall to the floor<br \/>Then stop to hear you laugh.<\/p>\n<p style=\"text-align: center;\">And never would I question<br \/>What sick children must face<br \/>Never would I have a need<br \/>To ask God for his grace.<\/p>\n<p style=\"text-align: center;\">If I could write your journey son<br \/>Perhaps I&#8217;d not convey<br \/>The message that HE longs to share<br \/>&#8220;We must live for today.&#8221;<\/p>\n<p style=\"text-align: center;\">Your story has been written<br \/>Each stroke penned with great care<br \/>He knows each thought I have of you<br \/>He&#8217;s numbered every hair.<\/p>\n<p style=\"text-align: center;\">No, I can&#8217;t write your story<br \/>Although I wish I could<br \/>I must heed what he says to me<br \/>&#8220;All things work for the good.&#8221;<\/p>\n<p style=\"text-align: center;\">If I could write the life you&#8217;d live<br \/>I&#8217;d fail&#8230;don&#8217;t you see?<br \/>I&#8217;ll leave it in much better hands<br \/>He&#8217;ll write it perfectly.<\/p>\n<h3 style=\"text-align: left;\">What Perfect Ending Would You Write for Your Child?<\/h3>\n<p>Oh my, I know just how Stephanie feels? I so often wanted to rewrite my son&#8217;s story when he was medically fragile. It took a long time for me to leave the pen in God&#8217;s hand. How about you? What have you been learning from your child lately? Leave a comment. Read more about Stephanie and her medically fragile son&#8217;s heart condition at her blog, <strong><a href=\"http:\/\/braedensheartjourney.blogspot.com\/2012\/08\/\" target=\"_blank\" rel=\"noopener\">With a Hopeful Heart<\/a>.<\/strong><\/p>\n<p><em>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=&#8221;4.4.2&#8243;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.4.2&#8243; background_color=&#8221;#b4dbc0&#8243; custom_padding=&#8221;20px|20px|20px|20px|false|false&#8221;][et_pb_blurb title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9hdXRob3IiLCJzZXR0aW5ncyI6eyJiZWZvcmUiOiJCeSAiLCJhZnRlciI6IiIsIm5hbWVfZm9ybWF0IjoiZGlzcGxheV9uYW1lIiwibGluayI6Im9uIiwibGlua19kZXN0aW5hdGlvbiI6ImF1dGhvcl9hcmNoaXZlIn19@&#8221; image=&#8221;http:\/\/differentdream.com\/wp-content\/uploads\/2019\/07\/46158483_10217985837907356_7315637075384991744_n.jpg&#8221; icon_placement=&#8221;left&#8221; image_max_width=&#8221;100px&#8221; content_max_width=&#8221;800px&#8221; _builder_version=&#8221;4.9.4&#8243; _dynamic_attributes=&#8221;title&#8221; header_font=&#8221;Rubik|500|||||||&#8221; header_text_color=&#8221;#44465f&#8221; header_font_size=&#8221;14px&#8221; header_line_height=&#8221;32px&#8221; body_font=&#8221;Rubik||||||||&#8221; body_text_color=&#8221;rgba(0,6,69,0.6)&#8221; body_link_text_color=&#8221;#ffffff&#8221; custom_css_main_element=&#8221;font-weight: 400;&#8221; border_radii_image=&#8221;on|100px|100px|100px|100px&#8221; border_color_all_image=&#8221;#ffffff&#8221; box_shadow_style_image=&#8221;preset1&#8243; box_shadow_vertical_image=&#8221;20px&#8221; box_shadow_blur_image=&#8221;40px&#8221; box_shadow_color_image=&#8221;rgba(68,70,95,0.27)&#8221; locked=&#8221;off&#8221;]<p>Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.<\/p>[\/et_pb_blurb][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.4.2&#8243;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.4.2&#8243;][et_pb_comments _builder_version=&#8221;4.4.2&#8243; custom_button=&#8221;on&#8221; button_text_color=&#8221;#42313A&#8221; button_bg_color=&#8221;#EBDCB2&#8243;][\/et_pb_comments][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;3.25&#8243; custom_padding=&#8221;|||&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_sidebar _builder_version=&#8221;4.4.2&#8243;][\/et_pb_sidebar][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.9.2&#8243; use_background_color_gradient=&#8221;on&#8221; background_color_gradient_start=&#8221;#42313A&#8221; background_color_gradient_end=&#8221;#EBDCB2&#8243; background_color_gradient_direction=&#8221;159deg&#8221; custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; border_width_all=&#8221;3px&#8221; border_color_all=&#8221;#1c1259&#8243; saved_tabs=&#8221;all&#8221;][et_pb_row column_structure=&#8221;1_2,1_2&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;1&#8243; _builder_version=&#8221;4.9.2&#8243; width=&#8221;100%&#8221; max_width=&#8221;100%&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;25px|0px|5px|0px|false|false&#8221;][et_pb_column type=&#8221;1_2&#8243; module_class=&#8221;horizontal_optin_column_1&#8243; _builder_version=&#8221;4.3.4&#8243;][et_pb_text _builder_version=&#8221;4.4.2&#8243; header_text_align=&#8221;right&#8221; header_text_color=&#8221;#45107a&#8221; header_3_font=&#8221;Dancing Script|700|||||||&#8221; header_3_text_align=&#8221;center&#8221; header_3_text_color=&#8221;#B4DBC0&#8243; header_3_font_size=&#8221;45px&#8221; custom_margin=&#8221;10px||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221;]<h3>Subscribe for Updates from Jolene<\/h3>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.3.4&#8243;][et_pb_signup mailchimp_list=&#8221;JolenePhilo|89f719a52b&#8221; layout=&#8221;bottom_top&#8221; first_name_fullwidth=&#8221;off&#8221; last_name_field=&#8221;off&#8221; email_fullwidth=&#8221;off&#8221; module_class=&#8221;custom_emailoptin&#8221; _builder_version=&#8221;4.4.2&#8243; form_field_focus_background_color=&#8221;#42313A&#8221; background_enable_color=&#8221;off&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;16px&#8221; button_text_color=&#8221;#42313A&#8221; button_bg_color=&#8221;#B4DBC0&#8243; button_border_width=&#8221;2px&#8221; button_border_radius=&#8221;0px&#8221; button_font=&#8221;|||on|||||&#8221; button_use_icon=&#8221;off&#8221; button_custom_margin=&#8221;5px||||false|false&#8221; button_custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; custom_padding=&#8221;0px|0px|0px|0px|false|false&#8221; border_width_all_fields=&#8221;2px&#8221;][\/et_pb_signup][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.4.2&#8243; custom_padding=&#8221;0px|||||&#8221;][et_pb_row _builder_version=&#8221;4.4.2&#8243;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.4.2&#8243;][et_pb_text _builder_version=&#8221;4.4.2&#8243; header_font=&#8221;EB Garamond|600|||||||&#8221; header_text_color=&#8221;#B6452C&#8221; header_font_size=&#8221;50px&#8221; header_text_shadow_style=&#8221;preset1&#8243;]<h1 style=\"text-align: center;\">Related Posts<\/h1>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.4.2&#8243;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.4.2&#8243;][et_pb_blog fullwidth=&#8221;off&#8221; posts_number=&#8221;3&#8243; include_categories=&#8221;current&#8221; show_more=&#8221;on&#8221; _builder_version=&#8221;4.4.2&#8243; header_text_color=&#8221;#42313A&#8221; meta_font=&#8221;||on||||||&#8221; read_more_font=&#8221;|||on|||||&#8221; read_more_text_color=&#8221;#B6452C&#8221; read_more_font_size=&#8221;12px&#8221; pagination_text_color=&#8221;#B6452C&#8221; pagination_font_size=&#8221;20px&#8221;][\/et_pb_blog][\/et_pb_column][\/et_pb_row][\/et_pb_section]\n","protected":false},"excerpt":{"rendered":"<p>Stephanie Ballard describes how she longs to write a perfect ending to her medically fragile son&#8217;s story and what she&#8217;s learning as his story unfolds.<\/p>\n","protected":false},"author":1,"featured_media":43941,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<a href=\"http:\/\/differentdream.com\/wp-content\/uploads\/2012\/10\/1215934_sunday_half_past_ten_a_m_.jpg\" rel=\"attachment wp-att-7300\"><img class=\"aligncenter wp-image-7300\" title=\"Writing Your Child's Story\" src=\"http:\/\/differentdream.com\/wp-content\/uploads\/2012\/10\/1215934_sunday_half_past_ten_a_m_.jpg\" alt=\"Stephanie Husted describes how she longs to write a perfect ending to her medically fragile son's story and what she's learning as his story unfolds.\" width=\"500\" height=\"307\" \/><\/a>\n\nI'd like to introduce you to Stephanie Ballard, a new <a href=\"http:\/\/differentdream.com\/meet-the-guest-bloggers\/\">Different Dream guest blogger<\/a>. You may recall meeting her in September, when she shared the poem she wrote for her son's teacher. Reader response to that post led to an invitation to guest blog on a regular basis. Today, she describes how she longs to write the perfect ending to her medically fragile son's story.\n<h3 style=\"text-align: center;\">How I'd Like to Write Your Story<\/h3>\nI can hear the gentle patter of his footsteps scurrying across the carpet as he dashes into my bedroom in the early morning hours. \"Good morning mama,\" he whispers while climbing into the bed beside me.\n\n\"I'm awake,\" I answer sleepily, as he wraps his tiny fingers into my hair. \"Guess who loves you?\" he asks.\n\nI find myself smiling from under the covers. This has become our ritual-a game that belongs only to us. I relish these morning moments...as I am able to connect with my son without all of the interruptions and worries that I know we will face as the day wears on.\n\nNo one could have prepared me for life with a medically fragile child. It is a day by day learning lesson full of challenges and triumphs, but my son is my greatest teacher. \"Hmm\"...I say in response to his question. \"Does Braeden love me?\"\n\nHe giggles in response, and nods his head up and down emphatically.\n\n\"Guess who I love?\" I ask in response, as I tumble out from under my warm comforter.\n\nHe silently taps his finger under his chin, as if in thought mode and then says, \"Coffee?\" I laugh out loud, knowing that life is full of uncertainties...but I am thankful for this moment in time.\n<h4 style=\"text-align: center;\">Your Story<\/h4>\n<p style=\"text-align: center;\">If I could write <a href=\"http:\/\/braedensheartjourney.blogspot.com\/2008\/08\/your-story.html\" target=\"_blank\" rel=\"noopener\">your story<\/a> son...\n(Oh how I wish I could)\nI'd pen for you a journey\nThat held nothing but good.<\/p>\n<p style=\"text-align: center;\">Wouldn't it be perfect\nIf that job belonged to me?\nI think I'd change a thing or two\nWhile writing your story.<\/p>\n<p style=\"text-align: center;\">I'd write of lasting happiness\nThe storms would stay at bay\nI\u2019d write your story carefully\nI'd have so much to say.<\/p>\n<p style=\"text-align: center;\">You'd know not of a hospital\nor days in ICU\nYou'd only know of simple things\nLike other children do.<\/p>\n<p style=\"text-align: center;\">The sun would rise...Yes everyday\nand shine to make you smile\nYou'd never know a day of pain\nYou'd never face a trial.<\/p>\n<p style=\"text-align: center;\">You'd dance to music all your own\nWhile watching Sesame Street\nI'd tuck you into bed each night\nand life would be complete.<\/p>\n<p style=\"text-align: center;\">I'd write of picnics in the park\nand winters in the snow\nI'd write of laughter, joy and love\nI'd sit and watch you grow.<\/p>\n<p style=\"text-align: center;\">I'd proofread till my eyes grew tired\nEach line and paragraph\nand let my pen fall to the floor\nThen stop to hear you laugh.<\/p>\n<p style=\"text-align: center;\">And never would I question\nWhat sick children must face\nNever would I have a need\nTo ask God for his grace.<\/p>\n<p style=\"text-align: center;\">If I could write your journey son\nPerhaps I'd not convey\nThe message that HE longs to share\n\"We must live for today.\"<\/p>\n<p style=\"text-align: center;\">Your story has been written\nEach stroke penned with great care\nHe knows each thought I have of you\nHe's numbered every hair.<\/p>\n<p style=\"text-align: center;\">No, I can't write your story\nAlthough I wish I could\nI must heed what he says to me\n\"All things work for the good.\"<\/p>\n<p style=\"text-align: center;\">If I could write the life you'd live\nI'd fail...don't you see?\nI'll leave it in much better hands\nHe'll write it perfectly.<\/p>\n\n<h3 style=\"text-align: left;\">What Perfect Ending Would You Write for Your Child?<\/h3>\nOh my, I know just how Stephanie feels? I so often wanted to rewrite my son's story when he was medically fragile. It took a long time for me to leave the pen in God's hand. How about you? What have you been learning from your child lately? Leave a comment. Read more about Stephanie and her medically fragile son's <a href=\"http:\/\/www.ncbi.nlm.nih.gov\/pubmedhealth\/PMH0002096\/\" target=\"_blank\" rel=\"noopener\">heart condition <\/a>at her blog, <a href=\"http:\/\/braedensheartjourney.blogspot.com\/2008\/08\/your-story.html\" target=\"_blank\" rel=\"noopener\">With a Hopeful Heart<\/a>.\n\n<em>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>","_et_gb_content_width":"2880","footnotes":""},"categories":[3559,3615,3583],"tags":[403,3705,3806,3747,3807],"class_list":["post-43931","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-different-dream","category-encouragement","category-spiritual-support","tag-faith","tag-guest-blogger","tag-medically-fragile-children","tag-stephanie-ballard","tag-stephanie-husted"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>A Medically Fragile Child&#039;s Perfect Ending<\/title>\n<meta name=\"description\" content=\"Stephanie Ballard describes how she longs to write a perfect ending to her medically fragile son&#039;s story and what she&#039;s learning as his story unfolds.\" \/>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"A Medically Fragile Child&#039;s Perfect Ending\" \/>\n<meta property=\"og:description\" content=\"Stephanie Ballard describes how she longs to write a perfect ending to her medically fragile son&#039;s story and what she&#039;s learning as his story unfolds.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/jolenephilo.com\/staging\/medically-fragile-childs-perfect-ending\/\" \/>\n<meta property=\"og:site_name\" content=\"Jolene Philo Staging\" \/>\n<meta property=\"article:published_time\" content=\"2012-11-15T13:00:10+00:00\" \/>\n<meta name=\"author\" content=\"jphilo\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@homeagainpodcst\" \/>\n<meta name=\"twitter:site\" content=\"@homeagainpodcst\" \/>\n<meta name=\"twitter:label1\" content=\"Written 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