The day our lives changed
February 12th of 2016 is a day I remember very vividly. This was the day that Wyatt was diagnosed with Cystic Fibrosis. First, let’s jump back to the day before. On February 11th we were getting dinner ready when I got a call from the pediatrician. Of course my ringer was off and we received a voicemail asking for us to give her a call back to discuss some abnormal results from Wyatt’s newborn screening. I immediately phoned back, because as we all know, parents worry about any little abnormal thing when it comes to their babies. Our pediatrician answered right away and said that one blood test came back abnormal and that they would need to do further testing. I asked what the abnormal result could mean and she said “cystic fibrosis”. She assured me that I shouldn’t worry at this point until we got a confirmation. That is way easier said than done.
When she said cystic fibrosis I will be completely honest-I had zero clue what it meant except that it had something to do with the respiratory system. My mind went back to well over a decade ago to a commercial I had seen played on t.v. regularly. Two little boys were in the bathroom and they began to deflate. I do not remember any details of the commercial but did know that the life expectancy was not high. I went and told Warren about what the doctor just told me and we both went to trusty Dr.Google to research a bit more. This is what we found out:
-the chance of Wyatt having CF was 1/3600 (this is equal to approximately 0.03%)
-people with CF have saltier sweat
-people with CF have very stinky and greasy poop
-people with CF can have trouble gaining weight properly
-CF is the most common fatal genetic disease affecting Canadians
With all this new to us information we decided there was no way Wyatt could have CF. I mean how could Wyatt be that 0.03%? Warren and I both admitted to licking Wyatt’s face (don’t judge us, you would do it too!), and he wasn’t salty tasting. Wyatt had stinky poop but what baby doesn’t? Wyatt also was a very big baby (weighing in at 9lbs and 10oz at birth) and hadn’t lost weight in his first couple weeks of life. And Wyatt sure didn’t look like he had a fatal disease. So we went to bed, feeling anxious but sure that the further testing would indicate he doesn’t have cf. Errors happen all the time and we fully believed this was the case with Wyatt
The next day (February 12th) we got a call in the morning from a nurse at the pediatric respirology clinic at children’s hospital. They wanted us to come in. I asked her a bunch of questions about Cf and what it could mean for Wyatt but she was very vague and said they would discuss when we got there. We were under the impression that this was the further testing our pediatrician informed us about so we brought Oliviah with us (Lucas was in school). The time until the appointment seemed to drag on and no matter how busy we tried to be, the time wasn’t moving fast enough. Finally, we get to the clinic and wait. We roam the halls, looking at posters about cystic fibrosis, still completely convinced that this disease is not going to be our new reality.
We got called into the room and I still remember the nurse and the Dr’s names so clearly. The Dr did not skip a beat or beat around the bush. He said “Wyatt has cystic fibrosis”. Just like that, one sentence completely changed our lives, and at this point we still did not realize how much it would change. I completely broke down and would not let go of Wyatt while the Dr asked us what we knew about CF. I very bluntly said “he’s going to have a terrible life and die early.” This is what all the information told us. He reassured us that Wyatt would go on to play sports, graduate high school, have a career, get married, etc. He told us that research is changing all the time. I appreciate his words now, but in the moment I felt like he was trying to calm us down after receiving this news. We asked if there was a way that this information was false, could we get another test done? The dr assured us he was 100% certain and was even able to tell Warren and I what our genetic mutations were.
Somehow this felt like it was all my fault. I’m Wyatt’s mother and I felt as though I wasn’t protecting him even though it was beyond my control. The next few days were spent grieving. It felt like we lost a member of the family. We were grieving the loss of the life we had expected for Wyatt. There is nothing normal about living with CF and we very quickly learned that CF does not take a break. The days with cf are spent administering various medications and doing therapy and this began immediately after diagnosis. We quickly learned that CF wasn’t just a respiratory disease, but a multi-organ disease.
I took many showers that weekend to be able to escape the reality we faced and to be upset away from Oliviah and Lucas. They simply were too young to understand exactly what CF meant to our family, and we were in no position to share the news with them in a way that wouldn’t scare them. We were very scared ourselves and did not know enough yet. The rest of my time was spent holding Wyatt. I didn’t want to let him go.
Looking back four years ago, I can find some positives to this journey we were given:
-we always knew we have a great family and group of friends, but the diagnosis really reminded us of the fantastic people in our lives. To see everyone come together for our family, lend an ear to listen when we needed, fundraise with us, etc. was (and still continues to be) very humbling. Our Walking for Wyatt team grows every year and for that we are so grateful. We truly couldn’t do this alone.
-we have met some of the strongest, bravest, and kind people in the CF community. Four years ago I didn’t know any of these people existed, and now I am blessed to call so many of them friends. The fellow caregivers of CF children that I have met have taught me to truly enjoy the moments we have. I know that if I have a question about Wyatt, I have a whole list of people I can turn to for advice.
-I have met so many amazing people living with CF (from new babies to adults) who inspire me to enjoy my life that I have and not take a single breath for granted. They remind me on a daily basis that Wyatt is not alone and they are fighting this battle along with us.
I have watched Wyatt grow into this strong, brave, funny, adventurous little human that doesn’t let cystic fibrosis stop him. While this adventure has been full of ups and downs, we are thankful for the three healthy and happy kiddos that we have right now in this moment, and all of the people who we have met along the way.
Wyatt is not the only one who has grown on this journey. Warren and I have been able to make this life our new normal and enjoy each and every moment with all of our kids. Remembering the fear of those initial days reminds me that we have also come so far. Lucas has grown to be Wyatt’s biggest advocate. He shares his story at school, with friends, and doesn’t miss an opportunity to raise critical funds for cf research. Oliviah makes sure to lend Wyatt a hand when he has to do bloodwork or other testing and tells him it will be okay. She always keeps him company while doing therapy and I know when he’s at school with her she will make sure he’s ok.
Please feel free to leave a comment or question below and thank you so much for taking the time to read.
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