God doesn’t give you any more than you can handle….I just wish he didn’t trust me so much. Who knew how true these words would be back in the early 90’s when I moved to Montana on a whim with a road-map, learned to drive a tractor, and met the father of my children. My daughter Jessika was born in January 1994. By March she had her first sinus infection. She was sick from day one, and my “mother’s intuition” must have been on high alert, because I kept bringing her to one doctor’s appointment after another with no answers. I started to doubt myself, and wondered if I was one of those hypochondriac parents. Jess had constant sinus infections, coughed all the time, and would eat more than most grown men. We also called her “little miss poops a lot”. I still feel bad about that one! Chase was born in June 1996, and while he didn’t have any of the sinus or coughing issues, they shared the same digestive issues. I just assumed that was our normal. Little did I know at the time.
I had taken Jess to the same doctor 11 times in 2 years. He finally sat me down in the office and told me “there is nothing wrong with your child. You are looking for something that just isn’t there”. I was angry at myself, and did a lot of doubting and a lot of soul searching. I finally realized that this guy had no idea who I was, and knew nothing about me. He also didn’t realize how stubborn I could be. I paid attention to that nagging feeling in my gut that something was wrong, and took Jess to another doctor – the pediatrician who happened to be on call the night Jess was born. She was diagnosed with Pneumonia, and given multiple antibiotics. We were told to come back in 10 days. Our new Dr. saw Jess after 10 days, and still didn’t like what she saw. She told me she wanted to do a sweat test to rule out cystic fibrosis. I agreed, got the appointment set up in Great Falls, and walked out the door to the office. She called me later that day, and asked me to come back into her office. She wanted to discuss this cystic fibrosis thing, because as she said, “you didn’t react enough”. I had no clue what I was getting into. Jess was diagnosed on October 17, 2002. She was 8 years old. She remembers the day of her diagnosis, and what it was like to be “normal” before that day. 2 weeks after Jess’s diagnosis, we headed back to Great Falls to figure out a treatment plan. Our whole family was asked to attend this appointment, as this would affect us all. At the last minute, they asked if we could come in early for Chase to do a sweat test, since this is a genetic disease; just to rule it out. Chase was diagnosed with Cystic Fibrosis that same day; on November 1st, 2002. He was 6.
I immediately became the care-giver, home nurse, medication organizer, treatment scheduler, transportation specialist, hospital-stay emotional support parent, and air-way clearance enforcer; along with my normal “mom” duties. I also learned to accept the highs and lows of having children with Cystic Fibrosis.
Jump ahead a few years (or 17), and I have two amazing, supportive and loving adult children, who both have learned to live with their CF on their own terms. Jess graduated from Montana State University in 2016 with a degree in Early Childhood Services. She is playing Roller Derby and hopes to start her Master’s program in the near future. Chase will graduate from MSU in May 2020 with a degree in Music Education. Believe it or not, he plays the trumpet. Both my kids have chosen to not let CF define who they are.
I am no longer the caregiver. I am no longer in charge of ordering medications, scheduling doctor’s appointments, or spending weeks on end in the hospital with one or both of my kids. I no longer have to fight with the insurance company over not paying a claim. That is something Jess and Chase both have to now do on their own. I do however continue to worry. That will never go away. I also celebrate their accomplishments with them! I have faith, and hope that both my kids were raised to be strong and independent. They both have taken charge of their lives and their health, and I couldn’t be prouder. They say the hardest part of parenting is succeeding. I think I succeeded.
Cody Dieruf passed away in 2005, just a few years after my kids were diagnosed. We had the honor of meeting Cody very briefly at clinic one afternoon; although we didn’t know it at the time. She was a beautiful young woman who took the time to have a conversation with Jess about medications, all-day-long clinic appointments, and their futures. After the foundation was started, and we met the Dieruf family, we saw pictures of Cody, and realized who she was. That is a memory I will always cherish.
The Cody Dieruf Benefit Foundation has been instrumental in helping my family succeed. By helping CF kids with medical or travel expenses; sports activities that are so important to our kids’ health to being general ambassadors for our kids; the Cody Foundation has been a blessing! From day 1 it was evident that the foundation felt that personal connections with CF families were important. This is a lonely disease, as CF patients are recommended to not be in close proximity to each other. We now have an amazing group of moms’ who can share our joys, fears, triumphs and concerns. We will all get together towards the end of September for the 3rd annual CF Mom’s Retreat, “We Walk Tggether” and I can’t wait to see what we can accomplish! I’m blessed to be a part of this amazing group of women.
Has this journey with Cystic Fibrosis been easy? No. It’s hard, and it hurts, and it’s a blessing, and there has been so much joy. I cherish every minute with my kids. My family is amazing, and this foundation family is equally amazing. I guess God really does trust me, because through it all, with faith, determination and just plain stubbornness (and this supportive group!), I’ve survived.
