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<\/figure>\n\n\n\nThe training and medication schedules left little time to process everything happening to them.<\/p>\n\n\n\n
\u201cIt was terrifying. We were angry and mad,\u201d said Cailey. \u201cAs a parent, there\u2019s nothing we can ever do that\u2019s going to take this away from him. That\u2019s a feeling no parent wants to feel. It\u2019s so hard to get to that complete acceptance when you know there\u2019s just nothing you can do to take that away. It\u2019s a gut-wrenching feeling.\u201d<\/p>\n\n\n\n
So what do you do when you feel there\u2019s nothing you can do? You do what you can. You do all you can to ensure that CF does not define your child. You do all you can to raise awareness about a condition that is life-changing but invisible on the outside to the casual observer. You celebrate the same milestones and good things that other parents and children celebrate, but you do so with an even deeper appreciation. You look for strength from above and accept the help offered on earth. You take one minute at a time.<\/p>\n\n\n\n
Cailey said, \u201cThis diagnosis doesn\u2019t define our family. We\u2019re raising Nix to know that CF is going to be a representation of strength and tenacity and not one of weakness and imperfection. You always wonder if you\u2019re making that decision for your children, but the awareness we\u2019ve been able to raise and the families and friends we\u2019ve met is a constant reminder that this isn\u2019t something you can do by yourself. You have to have that community to make it through something like this every day.\u201d<\/p>\n\n\n\n
The decision to share their journey has not been easy, but the support they\u2019ve received through it has affirmed they\u2019re on the right track. The importance of helping others understand CF benefits all families living with the condition.<\/p>\n\n\n\n
Earlier this year, Cailey began posting about their life with CF on Instagram and Facebook. It\u2019s not easy being vulnerable, but the payoff has been priceless. They connect with others farther along than they are and can relate their experiences to families just being diagnosed. It\u2019s like a coin. Families living with CF are on one side, and the community that does not live with CF is on the other. Each side contributes value to the life of someone with CF.<\/p>\n\n\n\n
Cailey said we can help. \u201cShare a post that you see, or, if you\u2019re out and about, and you hear that someone has CF, give them our contact information.\u201d<\/p>\n\n\n\n
That\u2019s the currency of community. Let\u2019s pass it around and invest in hope and encouragement for a future where no one lives with CF because there is finally a cure. GN<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":" NINE MONTHS of excitement and anticipation preceded his birth. The first-time parents checked all the boxes of preparation. They asked about the most used baby items, were showered with love and gifts, and the nursery was decorated and well-stocked. The maternity photos captured the essence of this season of their lives. Shane and Cailey Warren […]<\/p>\n","protected":false},"author":4,"featured_media":17670,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"off","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[6],"tags":[],"class_list":["post-701","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-feature"],"yoast_head":"\n