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Why We No Longer Just 'Get By' With Our Daughter's Rare Diagnosis

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I knew I was having a girl. I knew her name was Cadence Elizabeth (Cadie). I knew I loved her even though I had never met her. I knew her big brother Eric was going to be great with her. I knew that she was going to be a redhead. I didn’t know she was going to be born with cystic fibrosis (CF). I could bore you with all of the numbers and scientific words to describe CF, but I won’t. What I will tell you is that CF sucks. Big time. It’s a failure to thrive disease. It affects Cadie’s lungs and pancreas. Basically, her lungs and pancreas are full of snot. Literal, mucous-y, snot.

Nice, huh?

Oh, you don’t know what the pancreas actually does? Well, neither did I! It helps you absorb protein and vitamins from the foods you eat. It’s kind of important. As are your lungs. On December 10, 2008 at 4:55 p.m. Cadie was 10 days old. Up until now, I thought she was a perfectly healthy baby. Sure, she farted a lot, and her poop smelled like something that would come out of a swamp monster… but I was starting to think that breast milk didn’t agree with her. Then I got the dreaded phone call. One of the doctors from our pediatrician’s office wanted to first, apologize he had to tell me this over the phone.

Panic completely set in.

Cadie was sick. Cadie had cystic fibrosis. What? What is that? She had to be seen first thing in the morning at the children’s hospital. I couldn’t comprehend what he was saying. He was specific when he said not to look online for any information about the disease.

My baby has a disease?

I cried. A lot. My husband, Mark, and I had my parents watch Eric the next day as we headed to the hospital, with our teeny, ­tiny, barely 5 pound baby. We spent hours in the office. They tried to explain what CF was. I honestly do not remember any of it. I remember I went through an obscene amount of tissues. They had to bring me a new box. I remember Mark had a blank stare, his eyes a little watery. I remember the nurse, as she applied a plastic disk to do a sweat test (the determining method to see if someone has CF) was chewing gum. I asked over and over again if there could be hope, if there was a mix up with her blood work.

Nope. She had CF.

The doctors gave us bottles of pills and liquid medicine she needed to start taking immediately. But…how do I get an 11-day-old to take pills? How do I cope? How do I not hold her all the time? I felt at the time, “How could we have done this to her?” The only way a person can have CF is if both parents are carriers of the disease. And we are carriers. Do you remember from high school biology, Mendel’s genetic law? It’s usually presented in a four-square box, where peas are used as an example. Well, with any genetic disease, you have a 50 percent chance of being a carrier, a 25 percent chance of having the disease and a 25 percent chance of not having, carrying or passing on the disease at all. Cadie is the 25 percent chance of having it, while Eric is the 25 percent chance of not having it and he will not pass it on to his children. It’s extremely different when it’s about your kids and not about a bag of peas.

We coped. We got by. We cried. We worried. We lived in fear of Cadie dying. We thought we would never be able to get through another day.

Cadie is now seven years old. We still cry and fall apart when we hear about another person with CF dying. Cadie has been hospitalized 20 times. She has had many surgeries. She had to get a port placed in her chest because her veins were too full of scars to have another PICC line. She had to have a g-­tube placed when she was 16 months old because she wasn’t gaining enough weight. She has been put under general anesthesia 14 times. She has to take around 32 pills every day. She swallows seven pills in one gulp, like a rock star! But, we have made it through it all. Cadie “gets through” 21 medications and hours of treatments and therapies.

However, we no longer just “get by.” We thrive.

We have no choice — because Cadie thrives, and she strives to be the best person she can be. She wants to be part of everything. Most likely, she might not see middle age. So, she lives her life to the fullest. She is a hero in a teeny, tiny body.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 12, 2016
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