{"id":31934,"date":"2020-05-14T00:05:45","date_gmt":"2020-05-14T05:05:45","guid":{"rendered":"https:\/\/differentdream.com\/?p=31934"},"modified":"2020-05-14T00:05:45","modified_gmt":"2020-05-14T05:05:45","slug":"5-gifts-cystic-fibrosis-has-given-me","status":"publish","type":"post","link":"https:\/\/jolenephilo.com\/staging\/5-gifts-cystic-fibrosis-has-given-me\/","title":{"rendered":"5 Gifts Cystic Fibrosis Has Given Me"},"content":{"rendered":"\n[et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”4.4.2″ global_colors_info=”{}”][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” global_colors_info=”{}”][\/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|||” global_colors_info=”{}”][et_pb_column type=”3_4″ specialty_columns=”3″ _builder_version=”3.25″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_row_inner _builder_version=”4.4.2″ global_colors_info=”{}”][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.4.2″ global_colors_info=”{}”][et_pb_image src=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9mZWF0dXJlZF9pbWFnZSIsInNldHRpbmdzIjp7fX0=@” _builder_version=”4.4.2″ _dynamic_attributes=”src” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.4.3″ global_colors_info=”{}”]

5 gifts cystic fibrosis<\/strong><\/a> has given me. Hmm. Can a parent raising a child with this condition (or any other) write those words and mean them? Guest blogger Laura Spiegel says yes, and in her post she traces the path that led her to be grateful for those 5 gifts.<\/em><\/p>\n

\u201cWhen can I stop doing my treatments?\u201d my daughter asks suddenly. I am hooking up her nebulizer and am caught off guard by her question.<\/span><\/p>\n

\u201cWhen there\u2019s a cure for cystic fibrosis<\/strong><\/a>.\u201d I pause. \u201cAnd I think that\u2019s going to come one of these days.\u201d<\/span><\/p>\n

\u201cMaybe it will be on my birthday.\u201d She picks up a book. Her birthday is in three months. She will be seven.<\/span><\/p>\n

\u201cThat would be something, wouldn\u2019t it? You\u2019re my brave, strong girl, and I love you with all my heart.\u201d<\/span><\/p>\n

\u201cYou\u2019re my mommy,\u201d she replies. “And you smell.\u201d<\/span><\/p>\n

As a full-belly laugh builds from deep within, it hits me. This exchange represents my daughter to a T. Her inquisitiveness. Her humor. Her hope in spite of it all.<\/span><\/p>\n

A life with cystic fibrosis<\/strong><\/a> is often filled with uncertainty, frustration, and fear. As a mother, I\u2019ve experienced more lows in the last seven years than in the thirty years prior. I worry. I fret. My heart aches to think of the disappointment, the loss my daughter may one day feel. I would in a heartbeat give my life for her to be free from this disease.<\/span><\/p>\n

And yet. There is a beauty to our days. An overwhelming sense of what matters and what doesn\u2019t. What\u2019s worth it and what\u2019s not. In addition to its grief, a life with cystic fibrosis<\/strong><\/a> has brought my family an unexpected ability to nurture the blessings alongside the battles. \u00a0<\/span><\/span><\/p>\n

Here are the top 5 gifts cystic fibrosis has given me:\u00a0<\/span><\/span><\/p>\n

    \n
  1. Perspective<\/b> \u2013 I used to sweat the small stuff and strove for perfection in everything. The more I had, the more I wanted. These days, my priority is the health and liveliness of my family. We don\u2019t have to be perfect; we just have to be here. Perspective has helped me relegate the small stuff to the \u201cjunk drawer\u201d of my mind. Every now and again, I\u2019ll open it up and play around. But most days, there\u2019s only so much room in my head for this kind of stuff.<\/span><\/li>\n
  2. Purpose<\/b> \u2013 I believe a well-lived life hinges on where you spend your time and who you spend it with. Four years ago, I leaped off the corporate ladder after realizing that I wasn\u2019t where I was meant to be. Since then, I have soaked up time with both of my kids. I have partnered with children\u2019s hospitals to create meaningful experiences for families. I have blogged and connected with dozens of parents who are walking in similar shoes. We laugh, we cry, and we search for some semblance of control. Above all, we celebrate the strength within us. In this work, I have found my purpose.\u00a0<\/span><\/span><\/li>\n
  3. Hope<\/b> \u2013 If I could have one wish, it would be for a cure to cystic fibrosis<\/strong><\/a>. Until that happens, I will put huge trust in the medical and scientific communities. New iterations of drugs that help address the genetic cause of disease? Yes, please. Gene editing in the future? Bring it on. So many men and women work hard every day to help my daughter live a long, full life. Thank you for giving my family hope.<\/span><\/li>\n
  4. Faith<\/b> \u2013 I am a Christian and am raising my children with faith. When I put my daughter to bed each night, I remind her that angels dance beside her bed. We even sing about it. \u201cAnd while they dance, my Jesus will watch over me and keep me healthy, happy, safe, and strong. Warm and cozy all night long. Healthy, happy, safe and strong, my Jesus keeps me.\u201d Her eyes close, and I know that she is deeply blessed.<\/span><\/li>\n
  5. Beauty<\/b> \u2013 When I see my daughter digging for worms under the watchful eye of her brother. When I feel the warm touch of her hand. When I hear her singing as she tries to outswing her shadow. When she races after bubbles, twirls in her tutu, and cruises down the street, streamers flying. She is beautiful to me, and God couldn\u2019t have made her any better, cystic fibrosis<\/strong><\/a> and all.<\/span><\/li>\n<\/ol>\n

    These are the 5 gifts cystic fibrosis<\/strong><\/a> has given me. To all the parents out there, I hope that amidst the hard times and uncertainties, you can find moments of thankfulness for the gifts your child’s condition has given you.\u00a0<\/span><\/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 for the first in the pop up box and the second at the bottom of this page.<\/i><\/span><\/p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=”4.4.2″ global_colors_info=”{}”][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” global_colors_info=”{}”][et_pb_blurb title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9hdXRob3IiLCJzZXR0aW5ncyI6eyJiZWZvcmUiOiJCeSAiLCJhZnRlciI6IiIsIm5hbWVfZm9ybWF0IjoiZGlzcGxheV9uYW1lIiwibGluayI6Im9uIiwibGlua19kZXN0aW5hdGlvbiI6ImF1dGhvcl9hcmNoaXZlIn19@” image=”http:\/\/differentdream.com\/wp-content\/uploads\/2020\/05\/Headshot.jpg” icon_placement=”left” image_max_width=”100px” content_max_width=”800px” _builder_version=”4.4.3″ _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” 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” global_colors_info=”{}”]

    Laura Spiegel spent 12 years at the world\u2019s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts\u00a0Paint Her in Color<\/strong><\/a>, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn\u2019t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color<\/strong><\/a>, by email at\u00a0laura@paintherincolor.com<\/a><\/strong>, and on Facebook<\/strong><\/a> and Twitter<\/strong><\/a>.<\/p>[\/et_pb_blurb][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=”4.4.2″ global_colors_info=”{}”][et_pb_column_inner saved_specialty_column_type=”3_4″ _builder_version=”4.4.2″ global_colors_info=”{}”][et_pb_comments _builder_version=”4.4.2″ 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=”3.25″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_sidebar _builder_version=”4.4.2″ global_colors_info=”{}”][\/et_pb_sidebar][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.4.2″ custom_padding=”0px|||||” global_colors_info=”{}”][et_pb_row _builder_version=”4.4.2″ global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.4.2″ global_colors_info=”{}”][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″ global_colors_info=”{}”]

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    Find out why guest blogger Laura Spiegel says she’s grateful for 5 gifts cystic fibrosis has given her though she would give her life to heal her daughter.<\/p>\n","protected":false},"author":1,"featured_media":31938,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[3559,3615,3581],"tags":[4157,583,3104,3081],"class_list":["post-31934","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-different-dream","category-encouragement","category-grief","tag-cystic-fibrosis","tag-hope","tag-perspective","tag-purpose"],"yoast_head":"\n5 Gifts Cystic Fibrosis Has Given Me - Jolene Philo Staging<\/title>\n<meta name=\"description\" content=\"Find out why guest blogger Laura Spiegel says she's grateful for 5 gifts cystic fibrosis has given her though she would give her life to heal her daughter.\" \/>\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=\"5 Gifts Cystic Fibrosis Has Given Me - 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