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Cystic Fibrosis Awareness: Josephine Gardner
Josephine Gardner CYSTIC FIBROSIS AWARENESS
By Dr. Brenda Wilder
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Jennifer and Avery Garner have 2 beautiful children, Sully (6) and Josephine (4). Jennifer says their children are such an adventure, and they like to keep things very simple and not have their lives defined by Cystic Fibrosis (CF). The family loves nature walks, the beach, and the mountains. This is a sneak peek into their lives with CF.
The Garners were made aware of Josephine (Josie) having Cystic Fibrosis from her new-born screenings. Josie wasn’t fully diagnosed until about 6 months after several sweat tests. Josie’s pancreas became insufficient, she began to lose weight, and there were multiple hospital admissions until she was 10 months old. She suffered pancreatitis twice, with ultimate failure of the organ. Josie takes Lipase to digest her food. Jennifer remembers this as a long tedious process.
Jennifer says she is grateful for Josie’s medical team: Dr. Walker, Dr. Josie, and Dr. Catherine. The diagnosis was hard to accept initially, but the medical team guided her through the process. Others who made a difference were Nurse Chelsie and Melissa, the Social Worker. Jennifer credits them with keeping her sane during the beginning months. A strong support team is important.
Receiving a diagnosis of a terminal illness can be quite shocking. Some may feel immobilized, others heartbroken, some relieved to have a diagnosis for what has been a mystery illness. Natural reactions to such news vary, and the Garners’ reactions varied from day to day and even moment to moment. Jennifer knew it was okay to allow all of their emotions, but she also recognized that in Jesus Christ, her footing could be sure. Bad news is not a shock to God, and the Garners knew they could lean on Him and trust that He would be faithful to walk with them through whatever the disease progression would present. The diagnosis was a shock to Jennifer, and it hurt deeply! 4 years later, she is now at peace with the diagnosis.
Life with Cystic Fibrosis was rough in the beginning, but now it’s the family’s norm. Jennifer says, “It isn’t an inconvenience as some think, it’s all in what you become accustomed to. Before each meal, the normal routine is that Josie takes 6 pills before each meal and 3 to 4 pills with snacks. We do “shaky” treatments with breathing treatments 3 to 4 times a day, which consist of a vest filling with air and vibrating the mucus in her lungs to break it up.” Currently that is Josie’s only treatments, and her overall health is phenomenal.
The Garners goal is to live life fully and not show fear of the unknown to Josie. They find it best to follow the
doctors’ suggestions, provide the best care possible, and at times, follow a Mother’s intuition. Avery immediately implemented “Shelter in Place” when the Covid 19 virus started, so Josephine has not left the house since the beginning of March. The family is sanitizing and praying.
Jennifer says sometimes there’s a “voice inside” that tells her she can’t handle the CF life, that she’s not good enough, not strong enough, that she’s failed too many times, so it’s better to just give up before the next failure. At times she has felt tired, discouraged, disheartened, and disappointed; however, the Bible has much to say on this topic, and it calls fear out for what it is – a liar. Reading the powerful words in Scripture encourages her to never give up. “And let us not be weary in well doing: for in due season we shall reap, if we faint not. Galatians 6:9. This verse gives Jennifer strength..
The advice Jennifer would give to other families dealing with a new diagnosis of CF is “to accept that your child has a terminal illness, and that God hand-picked you to parent that child.” Don’t let your life be consumed with ‘SICKNESS.’ Live as normal a life as possible. Incorporate
CF treatments into life and keep going. At some point you have to decide whether to let CF define you or to push forward, accept what is, and keep the faith!”
