Wednesday, May 7, 2014

Day 4 and 5... Parents and Great Strides

In honor of day 4 and 5 of Cystic Fibrosis Awareness Month, I thought I would share a little more about my parents and how I got started participating in Great Strides. Let me begin by saying that I will be expressing my opinions on how my parents raised me, and that may differ from others' views on parenting children who have cystic fibrosis.

As I mentioned in yesterday's post, I was not diagnosed with cystic fibrosis until I was 6 years old. I attribute that delay to the level of activity I participated in as a child. I was always bouncing, running, jumping, or flipping. It was rare to see me sitting still or just hanging out inside. Because of that, I really only showed signs of CF with digestive issues. My parents took me to multiple pediatricians trying to figure out what was wrong with me. The doctors assured my mom repeatedly that she was just an overly concerned parent and that I was just a sickly child. Thankfully, my mom would not accept that as an explanation for her child having so many issues. She stood up as my advocate and would not rest until she had an actual answer. The third pediatrician she took me to went through a lot of possibilities that could explain what was going on. Mom has told me that when he mentioned cystic fibrosis, and she did some research on it, she knew that was it. The doctor was not as sure though, but he decided to have a sweat test performed anyways. Sure enough, it came back positive.

 I cannot even imagine how my parents felt the day they received the news that I had a life threatening disease. How do you even begin to grasp the fact that your child's normal life just got turned upside down? How do you learn to accept the realities of your child having something as serious as cystic fibrosis? Not only was I diagnosed with CF, but my sister was also born with a serious heart defect. She is missing her right ventricle! When she was 3 years old (close to the time of my diagnosis), she had to have open-heart surgery. You always hear stories of people just shutting down after receiving bad news, but I am so grateful that my parents did the opposite. They took all of that terrible news and our scary health issues and chose to fight with everything they had.

That's when we got involved with Great Strides. We began that first year raising money to help fund a cure, and we have never missed a year. I used to go door to door in my neighborhood asking for contributions, and while I don't go around my neighborhood anymore, I do ask all of my family and friends for help.

While my parents worked extremely hard to raise money to find a cure for cystic fibrosis, they also did everything they could to make sure I lived as normal a life as possible. I was never put in a bubble. I played outside with my friends constantly, and it was a fight just to get me to come back inside. They made sure I did my treatments and took my medications, but they always encouraged me to stay physically active. I took tumbling, dance, and went to cheerleading camp as a child. When I decided that I wanted to be a cheerleader in middle school, my parents supported me fully.

I can't brag on my parents enough, because I am blessed beyond belief to have parents who back me up in everything I do and who encourage me to make the right decisions for my health. They were strong when many people would have thrown in the towel. They instilled in me the morals and work ethic that I apply in my everyday life. They have modeled for me what it looks like to be successful individuals who never give up even when things seem to grim to bare. I cannot thank them enough for everything they do.

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