{"id":15571,"date":"2021-05-27T21:31:22","date_gmt":"2021-05-28T01:31:22","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=15571"},"modified":"2023-04-11T16:10:05","modified_gmt":"2023-04-11T20:10:05","slug":"living-my-dream-with-cf","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/living-my-dream-with-cf\/","title":{"rendered":"Hayalimi Ya\u015f\u0131yorum - KF ile"},"content":{"rendered":"

KF Fark\u0131ndal\u0131k Ay\u0131 blog serimizin bir par\u00e7as\u0131 olarak Kistik Fibrozis (KF) toplulu\u011fundan sesleri payla\u015fmaktan onur duyuyoruz. Bug\u00fcn\u00fcn konuk yazar\u0131 Steve Bell<\/a>sa\u011fl\u0131k hizmetleri marka stratejisti, e\u015f, baba ve KF'li yeti\u015fkin. Steve, KF ile ya\u015farken edindi\u011fi baz\u0131 bak\u0131\u015f a\u00e7\u0131lar\u0131n\u0131 ve KF'li olmayanlar\u0131n kronik bir hastal\u0131kla ya\u015fam hakk\u0131nda bilmelerini istediklerini payla\u015f\u0131yor.<\/span><\/i>EE'nin KF Fark\u0131ndal\u0131k Ay\u0131 kampanyas\u0131 hakk\u0131nda daha fazla bilgi edinmek i\u00e7in \u015fu adresi ziyaret edin www.emilysentourage.org\/crossoutcf<\/a>.<\/i><\/p>\n

Ge\u00e7enlerde o\u011flum Landon'\u0131 ilk beyzbol eldivenini almaya g\u00f6t\u00fcrd\u00fcm. K\u0131rm\u0131z\u0131 olan\u0131, mavi olan\u0131 ve gri olan\u0131 denedik. Hangisinin topu daha iyi yakalad\u0131\u011f\u0131n\u0131 g\u00f6rmek i\u00e7in ma\u011fazada mini bir yakalama oyunu oynad\u0131k. Gri olanda karar k\u0131ld\u0131k \u00e7\u00fcnk\u00fc o g\u00fcnk\u00fc e\u015fofmanlar\u0131na uyuyordu. \u00c7ok k\u00fc\u00e7\u00fck bir \u015feydi. Hayat\u0131nda muhtemelen hat\u0131rlamayaca\u011f\u0131 bir an.\u00a0<\/span><\/p>\n

Ama benim i\u00e7in b\u00fcy\u00fck olas\u0131l\u0131kla unutmayaca\u011f\u0131m bir d\u00f6n\u00fcm noktas\u0131.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

Bunun gibi k\u00fc\u00e7\u00fck \u015feyler her g\u00fcn oluyor. Bazen bir ad\u0131m geri \u00e7ekilip anlar\u0131n a\u011f\u0131rba\u015fl\u0131l\u0131\u011f\u0131n\u0131n tad\u0131n\u0131 \u00e7\u0131karabiliyorum, bazen de anlar h\u0131zla ak\u0131p gidiyor. Hayat\u0131m bu \u015fekilde \u015fekillendi. Kronik bir hastal\u0131kla ya\u015famak, ba\u015f\u0131n\u0131z\u0131n \u00fczerinde bir barda\u011f\u0131 dengeleyerek dola\u015fmaya benziyor. Ne zaman kayaca\u011f\u0131n\u0131z\u0131 bilemezsiniz. Ne zaman k\u0131r\u0131laca\u011f\u0131n\u0131 bilemezsiniz. Ve \u00fczerine bast\u0131\u011f\u0131n\u0131zda kesiklerin ne kadar derin olaca\u011f\u0131n\u0131 bilemezsiniz.\u00a0<\/span><\/p>\n

Kronik bir hastal\u0131kla ya\u015famak, ba\u015f\u0131n\u0131z\u0131n \u00fczerinde bir barda\u011f\u0131 dengeleyerek dola\u015fmaya benzer. Ne zaman kayaca\u011f\u0131n\u0131z\u0131 bilemezsiniz. Ne zaman k\u0131r\u0131laca\u011f\u0131n\u0131 bilemezsiniz. Ve \u00fczerine bast\u0131\u011f\u0131n\u0131zda kesiklerin ne kadar derin olaca\u011f\u0131n\u0131 bilemezsiniz.\u00a0<\/span><\/p><\/blockquote>\n

KF'li ya\u015fam\u0131m benzersiz bir bak\u0131\u015f a\u00e7\u0131s\u0131 getirdi. \u0130nsanlar bazen 37 ya\u015f\u0131nda bir bedene hapsolmu\u015f 65 ya\u015f\u0131nda bir adam oldu\u011fum konusunda \u015faka yap\u0131yorlar. \u00c7o\u011fu zaman ben de \u00f6yle hissediyorum. KF sizi h\u0131zl\u0131 b\u00fcy\u00fct\u00fcyor - \u00e7ocuklar\u0131n yapmamas\u0131 gereken konu\u015fmalar\u0131 yap\u0131yor, \u00e7ocuklar\u0131n yapmamas\u0131 gereken \u015feyleri yap\u0131yorsunuz. Neyin \u00f6nemli oldu\u011funu erken ya\u015fta fark etmenizi sa\u011fl\u0131yor. Bununla birlikte, KF'li olmayanlar\u0131n fark\u0131na varmas\u0131n\u0131n \u00f6nemli oldu\u011funu d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcm \u015fey \u015fu: Hala hayallerimiz var. Hedeflerimiz. Arzular\u0131m\u0131z. Hala sahip olduklar\u0131m\u0131zdan en iyi \u015fekilde yararlanmak istiyoruz. Herkes gibi bizim de ya\u015fama sevincimiz var. Ancak kelimenin tam anlam\u0131yla hayat\u0131m\u0131z\u0131 elimizden alan bir \u015feyle kar\u015f\u0131 kar\u015f\u0131yay\u0131z.\u00a0<\/span><\/p>\n

\"\"<\/p>\n

KF'li \u00e7o\u011fu insan gibi ben de zaman\u0131m\u0131n \u00e7o\u011funu bu hastal\u0131kla m\u00fccadele ederek ge\u00e7irdim ve ge\u00e7irmeye devam ediyorum. Ayr\u0131ca, beni \u00e7ocukken hayal etti\u011fim ya\u015fam yoluna geri d\u00f6nd\u00fcren, ya\u015fam\u0131 uzatan bir mucize olan Trikafta'n\u0131n faydalar\u0131n\u0131 deneyimleyecek kadar \u015fansl\u0131yd\u0131m. O zamanlar fark etmedi\u011fim \u015fey, hayallerimin nas\u0131l de\u011fi\u015fece\u011fiydi. Harika e\u015fim Megan'\u0131n kocas\u0131 ve iki harika \u00e7ocu\u011fum Landon ve Mackenzie'nin babas\u0131 olmak gibi basit bir hayalin ger\u00e7e\u011fe d\u00f6n\u00fc\u015fece\u011fini. Ve nefes alarak deneyimleyebilece\u011fim bir ger\u00e7eklik.\u00a0\u00a0<\/span><\/p>\n

Bence KF'si olmayanlar\u0131n fark etmesi gereken \u00f6nemli bir \u015fey var: hala hayallerimiz var. Hedeflerimiz. Arzular\u0131m\u0131z. Hala sahip olduklar\u0131m\u0131zdan en iyi \u015fekilde yararlanmak istiyoruz. Herkes gibi bizim de ya\u015fama sevincimiz var. Ancak kelimenin tam anlam\u0131yla hayat\u0131m\u0131z\u0131 elimizden alan bir \u015feyle kar\u015f\u0131 kar\u015f\u0131yay\u0131z.\u00a0<\/span><\/p><\/blockquote>\n

\u00a0<\/span>Her g\u00fcn uyan\u0131yorum ve iki k\u00fc\u00e7\u00fck \u00e7ocukla birlikte onlar\u0131 kre\u015fe g\u00f6t\u00fcrmek i\u00e7in m\u00fccadele ediyorum. \u00c7o\u011fu sabah bu bir sava\u015f ama ayn\u0131 zamanda \u00f6zel bir \u015fey. <\/span>
\n<\/span>
\n<\/span>\"Ben bir babay\u0131m.\" diyebiliyorum.\u00a0 <\/span>
\n<\/span>
\n<\/span>\"\u0130\u015fte benim o\u011flum\" diyebiliyorum.\u00a0 <\/span>
\n<\/span>
\n<\/span>\"Evet, Mackenzie ya\u015f\u0131na g\u00f6re b\u00fcy\u00fck.\" diyebiliyorum.\u00a0 <\/span>
\n<\/span>
\n<\/span>Hayalimi ya\u015fayaca\u011f\u0131m.<\/span><\/p>\n

\"\"<\/p>\n

\n

EE, EE'nin KF Fark\u0131ndal\u0131k Ay\u0131 kampanyas\u0131na harika bir katk\u0131 sa\u011flayan bu g\u00fczel eseri i\u00e7in Steve'e \u00e7ok te\u015fekk\u00fcr ediyor!\u00a0 <\/span><\/i><\/p>\n

#MyCFStory serisine sponsor olan Vertex Pharmaceuticals, Inc. \u015firketine \u00f6zel te\u015fekk\u00fcrler.<\/em><\/p>","protected":false},"excerpt":{"rendered":"

KF Fark\u0131ndal\u0131k Ay\u0131 blog serimizin bir par\u00e7as\u0131 olarak Kistik Fibrozis (KF) toplulu\u011fundan sesleri payla\u015fmaktan onur duyuyoruz. Bug\u00fcn\u00fcn konuk yazar\u0131 Steve Bell, sa\u011fl\u0131k hizmetleri marka stratejisti, e\u015f, baba ve KF hastas\u0131 bir yeti\u015fkin. Steve, KF ile ya\u015farken edindi\u011fi baz\u0131 perspektifleri ve KF ile ya\u015fayanlar\u0131n ne istediklerini payla\u015f\u0131yor... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":15574,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"none","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[{"url":"","title":"","desc":"","thumbnail":"","duration":"","rating":"","view_count":"","tag":"","cat":""}],"_seopress_pro_schemas_manual":[{"_seopress_pro_rich_snippets_type":"none"}],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1,174],"tags":[],"class_list":["post-15571","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","category-report"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/steve-bell-1.jpeg","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15571","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=15571"}],"version-history":[{"count":4,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15571\/revisions"}],"predecessor-version":[{"id":18788,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/15571\/revisions\/18788"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/15574"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=15571"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=15571"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=15571"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}