Skip to main content

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.


Popular posts from this blog

Exciting news!!

It's been awhile since I've written a blog post. This semester has been busy--not only because of school stuff, but also because of exciting life things. About a month ago, the most amazing man got down on one knee and asked me to marry him! And of course, I said yes!

Honestly, there were times that I questioned if I would ever marry someone. Living with cystic fibrosis is hard. Choosing to be with someone with cystic fibrosis is almost crazy. Think about it; I am not a normal 23 year old. I have to plan and plan and plan to make sure I fit breathing treatments, exercise, and eating into my schedule. When I travel, I have to take a crazy amount of stuff with me--my Vest, nebulizers, compressor, pills, inhaled medication, puffers, and snacks. I have to make sure I sleep 8-9 hours a night because my body uses more energy than most, and I need sleep to fight infection. I have to have a course of IVs at least twice a year. It's hard to be spontaneous and adventurous because CF…

CF limits

I was always told I could do anything.

That CF couldn't stop me.

That, even though my day to day life looked a little different with treatments and pills and hospitalizations, I could still be "normal".

I'm finding out now that's not necessarily the case.

Growing up, I knew I was different, but I still functioned like a normal kid. The only time I remember CF limiting me was my freshman and sophomore years in high school. My doctor, mom, and I made the decision to sit out of marching band my freshman year and to keep me on the sidelines running the metronome and helping how I could without actually participating my sophomore year. Junior year I was finally able to join marching band, and my senior year I was a drum major, so CF didn't limit me that much by the end of it all. I finished college in four years with a major, a minor, honors, and summa cum laude. I am in grad school now and will graduate on time summa cum laude with my masters in speech pathology.…

The false narrative

Today I was at church with my parents. After the baby dedication, the pastor prayed over the families. It was a fine prayer until he said something along the lines of "raising kids in a Christian home is the best way to ensure kids grow up healthy". This is when I opened my eyes and tuned out the rest of the prayer. Honestly, this is where I tuned out the rest of the service. This false narrative is exactly why American Christianity can be so out of touch with the world.
No. No. No. This is not how God works. Yes, in a world without struggle and pain and heartache, I wouldn't have cystic fibrosis. But in our current, broken world God uses illness and weakness to prove His strength and power and love. If God wanted to heal me, I have full confidence that He could and that He would. I know there are people who have experienced divine healing. But in many cases, God uses our weaknesses rather than spontaneously healing us. In 2 Corinthians 12, Paul says, "But He (the Lo…