Saturday, August 16, 2014

A Pang of Sadness and Joy

Hey friends! I recently saw this article on twitter, and I knew that I had to share it on my blog. If you know me at all, you know that cystic fibrosis is obviously a huge part of who I am. I have learned about the preciousness of life and how to trust God through the good times and the bad. I, of all people, know how hard life can be with cystic fibrosis. But I also know that I wouldn't trade my life for anything. I am extremely blessed with great friends and an amazing support system, and I know that God has a plan for my life. Me having CF wasn't a surprise to Him!

However, I have heard people say that with the ability of medical technology to know if a child is going to have a "problem" before it's born, parents should think critically about their options regarding life before they have to deal with immense health struggles. This last year, I even overheard one person say that all babies with CF should be aborted because parents shouldn't have to deal with it and the child won't have a good quality of life. You can imagine how much that hurt, how those words broke me to the core of my being, how my self-esteem began to plummet. That is, until I talked to my parents. They reminded me that I am deeply loved and cherished. They told me how I've brought them joy and taught them what it means to rely on God in every situation. They spoke truth to me about my value and reassured me that my worth would be the same whether I had CF or not. Although I did eventually resurface from the hurt I experienced, I still think about what I overheard and feel a pang of sadness.

The following article is written by a parent of a child with CF. She and her husband were confronted with the option of aborting her precious daughter before birth because they knew she would suffer from the disease. But, as you will read in the article, their daughter has been such a joy, and they are trusting God with her life!
By Mary Vought
A medical exam room is where most parents are presented with “their options” regarding life. It’s where they are overwhelmed with the unpleasant diagnoses that their unborn child has a life threatening genetic disorder. And, it’s where they are first presented with the challenges and trials that will mark their child’s entire time on earth.
But, it’s also where God’s blessings are revealed.
cysticfibrosis3Our daughter, Porter Louise Vought, was born in February of this year with cystic fibrosis (CF) – a genetic disorder that affects an individual’s lungs and digestive organs. When a healthy individual catches a common cold their lungs fight off the sickness and eventually return to normal health. Individuals with CF can’t fight illness as well and in turn their lungs become scarred and riddled with irreversible damage that only increases with age. Often times this leads to lung and organ transplants and, eventually, a fatal lung disease with the average life expectancy in the early 40s.
There are currently only 30,000 individuals in the United States with CF. In recent years as prenatal testing has become a regular practice the number of babies being born with CF has decreased. According to a specific Kaiser Permanente report, 87% of babies who were diagnosed with cystic fibrosis were tragically aborted.
When we look at Porter we don’t see a statistic and we don’t see cystic fibrosis – we see a bundle of joy who has blessed our lives tremendously. Because of Porter, our hearts break for sick children and their families in a new way. We sympathize greatly with those that can’t afford or struggle to pay for basic medical needs. And the daily stresses of life that often used to consume us, matter much less.
The arrival of Porter has also deepened our faith in God. Instead of dwelling on her condition, we have been constantly reminded that she is “fearfully and wonderfully made” (Psalm 139:14) in order “that the works of God might be displayed in [her]” (John 9:3). Her Creator has a special purpose for her exactly as she is.
We do not mean to mask the very real challenges involved with caring for Porter. She has daily breathing treatments, chest physiotherapy, a number of expensive medications, doctor visits and not to mention the measures we must take in an attempt to keep her healthy.
For many, the idea of having a child with CF may seem like a heavy burden, but the joy we receive when she smiles from ear to ear outweighs that burden. We cherish the moments we have together and can’t imagine life without her.
You see, our daughter is only 5 months old but she’s already completely transformed the way we look at this world. She may not have the world’s longest life, but she will have a good life, and for that we are forever grateful.

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