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Day 12 of 31 Days of CF Topic: Recieving a CF diagnosis, being a mom to a child with CF As a parent receiving a diagnosis that your son has CF was challenging to no end! It was devastating and emotionally very difficult to accept a disease this harsh was about to consume his everyday life. I had a real fight of acceptance and questioning how this could happen, he was perfect! I had to accept to release anything my heart grasped before his birth, to grieve the expectation, accept the new challenge, the unknow. Doing so allowed me to be the caregiver my son needed. After diagnosis, at only 2 weeks, Drew struggled from recovering from bowel surgery. His whole first month was in NICU. His little fragile life was in it to fight for life. At the time I knew his diagnosis was a shortened life expectancy of 18years, and many years fighting lung infections that would make it hard for him to thrive. At one of my visits, I remember reaching into his bassinet and his grip on my finger was assurance. It grounded me to his soul as an advocate, one who covered all health care needs for him, the one who fought for him! I’ll never forget that powerful grip, he still sometimes holds on today! Knowing that care for CF required a lot of training and planning, I knew I needed help. I placed an ad for a nanny. After a while of searching, I had a call from a local gal, Emily. She asked if she could bring her mom to the interview, and I said yes. She instantly felt like a great match so she was hired! She dedicated her time to learn about treatments, showed up at hospital stays, took my oldest bowling or to ice cream, did vest treatments, came to appointments, and supported my needs to listen and give advice. Drew fought for many years, many hospitalized visits, tune ups, and bowel obstructions. And, today has been hospital free for several years. He began Kalydeco at age 5 and has a very active spirit! Besides his pancreas insufficiency which requires enzymes before meals, lung therapy treatment, and bronchodilator meds he is sooo happy! I hope you’re able to cope as a caregiver and remember you have to work on you to provide the best care!
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