Jay came as a surprise for me. I was 17 years old and just about to start my senior year of high school when I found out that I was pregnant. Although the situation wasn’t ideal and it came with many hardships and challenges, I was excited to be a mother and to experience all of the blessing that come with raising a child. Being a type 1 Diabetic, my pregnancy was high risk, terrifying, and required close monitoring throughout the nine months. However, I did my best to take care of myself and keep my blood sugars level. At that time, I didn’t have access to prenatal testing so I thought everything was going great and that my baby would be healthy. At 38 weeks, on April 7th, 2010, I was induced and ended up having him via cesarean section. He came out a whopping almost nine pounds with a head full of black hair. Things were slightly rocky from the start, he spent the first five days in the NICU (due to being unable to keep his blood sugar up) before we were able to go home. I had no idea what we were really in for.
His first pediatrician appointment was just a few days after we arrived home. I will never forget this day as it was the first time the topic of Cystic Fibrosis came up (and honestly the first time I had ever heard of it). Jay’s pediatrician told me that his PKU levels were abnormally high and that there was a chance he had Cystic Fibrosis. After asking questions, talking to others, and researching CF, I realized how serious of a disease it was. I was devastated.
Fast forward a few weeks and we get a sweat test to test for CF. The results came back that he did not have Cystic Fibrosis and that he was just a carrier of the gene- what a relief! Unfortunately that feeling of relief didn’t last long as he displayed all of the classic CF symptoms (salty skin, digestion issues, poor weight gain, and a cough that sounded like an adult with emphysema). For whatever reason, I still held out hope that he did not have this disease.
As time went on his symptoms progressed and it felt like nothing we did helped. Week after week we were at the doctor’s office being prescribed antibiotic after antibiotic. He threw up every time he ate and his respiratory symptoms were out of control. This was a difficult time as he was so sick and I was still trying to grow up myself. Even at this point I was still in denial that he had CF even though the symptoms were so evident. Finally on a cold, snowy night in February when Jay was ten months old, we were sent to Billings to be admitted as it was clear that he did have Cystic Fibrosis. I remember the drive home from the doctor’s office to pack our things- it was snowing, the roads were slick, and I was so hysterical that I drove through 2 red lights. There I was, an 18 year old single parent, who needed to get it together FAST in order to face this disease. Then off we went to Billings to officially being our CF journey. We adopted a completely new way of life that included multiple daily treatments, high calorie diets, and whole lot of medications. To say it was overwhelming is an understatement.
Cystic Fibrosis can easily be described as a roller coaster. There are ups, downs, twists, and turns that you never see coming. In the last nine years we have adapted to this lifestyle and learned how to get through the highs and lows that CF brings. Thinking about Jay’s health is truly difficult- the unknown of the future, the daily discomfort he feels, knowing that it’s his journey not mine and that no matter what I do it is out of my control. We try our best to focus on the positive though. We have spent countless hours together waiting in appointments, CF clinic, hospital stays, and sitting down for treatments. I will always be grateful for the extra time we get to spend together. We have learned to use humor as well. I tend to over salt his food to the point that it is inedible, surely he appreciates this. Because Jay threw up almost every meal for the first two years of his life to the point where I literally started catching his throw up in my hands that even now, when I think he’s going to throw up I instinctively hold my hands out. Along with all of the other blessings in our lives, these are the things that get us through.
Through it all, Jay has been the brightest light with the strongest spirit. He handled his obstacles with the courage that I wish we all had and with a smile on his face. He is truly a fighter and I am so proud to be his mom.
