FROM THE BEGINNING
October 17, 2012 is a day that we will never forget.
As the mother of two beautiful girls, Cassidy (5) and Lucia (2), the hopes, dreams & future plans that I had for them from the moment I laid eyes on them was that of any parent. Having the diagnosis of Cystic Fibrosis presented to Cassidy on that pivotal day of October 17th, 2012 did not fall into the perfect plan I had for her life.
Cassidy was born on February 15th, 2008 at Royal University Hospital in Saskatoon, SK. Our little Valentine was the most beautiful girl I had ever seen. After a text book pregnancy and delivery, we spent a few nights in the hospital and took our bundle to safety in her new home.
Like any first time parents you worry about all the things that can’t be controlled. Are they eating enough? Are they eating too much? Are they pooping too much? Are they sick? Are they too cold? too hot? And the list goes on and on.
Fast forward two years and our energetic toddler is still going to the bathroom record breaking amounts every day and complaining of constant stomach aches. My mommy instincts wouldn’t let up and I made an appointment with our family doctor. After being told, once again, that her bathroom frequency was “normal” I continued to use GOOGLE as my go to doctor to help us find our next direction.
This led us to the removal of gluten in our diet. We decided that with Jesse’s (my husband and Cassidy’s father) intolerance we should remove it completely and see what happens. We started Gluten Free in January of 2010 and immediately noticed an improvement in stomach aches and bathroom frequency but still saw quite regular set backs. We felt that we had found the main issue but that there was still another element that was missing. We continued bringing up the symptoms at regular doctors appointments and nothing seemed so out of the ordinary to do any further testing. After the birth of our second daughter, Lucia, all of the things that seemed “normal” with our first born, suddenly didn’t anymore and we began to ask ourselves more and more questions and started doing a lot more GOOGLE research to back up our questions.
Fast forward a couple of years later, in August 2012. After a fun night out at the Broadway Street Fair, we were faced with the worst stomach attacks that Cassidy had ever had. We made it home from the fair and the cramps were getting worse and worse until she was convulsing in pain on the bathroom floor, eyes rolling to the back of her head. I loaded her into our SUV and headed to the emergency room. After numerous tests showing nothing unusual, the x-rays came back showing extreme intestinal back up. This helped fast forward us into the pediatric gastroenterologist and after hearing the symptoms, he decided to perform 3 tests to start digging deeper in the issues that he thought may stem from the pancreas. A blood test, stool collection and sweat test. We were informed that a sweat test, tests specifically for Cystic Fibrosis and immediately began to research the disease.
A week later, Sunday, October 14, 2012, after being away for the weekend, we received a message on our answering machine that the results of her tests showed that there was almost 0% absorption of fat in Cassidy’s intestines as well as that her sweat chloride levels were elevated. They wanted us to come in on Wednesday of that week to re-test her. We began to panic immediately!
We were speechless, scared and shocked at the idea of our precious Cassidy being diagnosed with Cystic Fibrosis. My computer screen became a blur through the tears streaming down my face as I read about symptoms, life expectancy, day to day routines, lung transplants and general health. In a moment, our world felt like it was crumbling around us. All of the hopes & dreams we had for Cassidy’s future suddenly seemed like ‘What Ifs?’.
Monday & Tuesday of that week were a blur. All I wanted to do was snuggle with my Cassidy and tell her that everything was going to be okay, but she was too young to even know that anything was wrong. I dropped both girls off at daycare, because being in the presence of Cassidy brought on such incredible emotion that I didn’t want her to be alarmed. I attempted to focus on work at my office, called Jesse to see how he was doing and we both ended up coming home to our quiet house. We just sat in the living room together in silence. We researched, cried, tried to rationalize, cried some more until it seemed there were no more tears.
Looking at Cassidy later on that night, dancing, twirling and giggling in the living room, my heart ached. I still couldn’t look at her beautiful face without tears coming to the surface.
How could life ever be the same?
I wanted more twirling…more birthdays…more family time…more warm Christmas memories and more days for my girls to be best friends & sisters.
Wednesday, October 17, 2012 became the day that would change our lives forever. After repeating the sweat test on Cassidy, we sat in the sterile office, colorful butterflies painted on the walls, as one after the other, the Cystic Fibrosis specialists were sent in. Results had confirmed that this heart wrenching diagnosis was true. Amidst the streaming tears, while putting on a happy face for Cassidy so that she knew everything was going to be okay, there was a strange sense of relief. Knowing that we were moving in a direction of helping Cassidy feel better.
In that moment, life had instantly changed as we knew it.
I hugged Cassidy tighter that night. She couldn’t know that life would never be the same, cause this will be all she ever knows.