A few months ago, my family and I went to Family Day at Hopkins for CF families. Obviously the CF patients aren’t allowed to go but my mom, sister, stepdad, husband, and I all went to hear the latest about research and treatment. While we did hear a really good lecture on where research is headed, we left feeling insanely defeated. Actually we left in tears. We found out later that the lecture was geared more toward parents with older CF children rather than the newly diagnosed. We were so upset because we were expecting an exciting day of hope but it was overshadowed by a lot of really scary things that other parents were experiencing. Like feeding tubes. Despite it being a really tough experience I held onto one important thing I heard. One of the questions the discussion leaders asked was “What is your advice to other parents that have helped you cope with having a CF child?” A man stood up and said that he has a 21 year old son with CF, and he has been in therapy ever since his diagnosis and it has helped him tremendously to deal with everything.
I’ve been in therapy a couple different times in my life. I was the typical rebellious teenage girl. All of my experiences with therapy haven’t been the best, I just never found someone I really liked. I decided to try again while I was pregnant with Anna because my anxiety was at an all-time high. I was in a head-on car accident the summer before getting pregnant with Anna, luckily I was on my way to work so Jack wasn’t in the car and I wasn’t badly injured. However, the girl was texting and driving so she just crossed the center line into my lane and hit me head on which was so shocking that I couldn’t recover and I had an extreme fear of driving. This anxiety spread into all areas of my life and I got really obsessed with Jack’s safety. I decided to seek some therapy to help me get back to normal life. Luckily, I found a therapist who had been in an accident herself and knew the damage it could cause. Unfortunately, she was retiring only 2 months after I started seeing her. Sometimes I think about her because she thought I had a severe case of anxiety and I can’t imagine what she would think if she knew about Anna’s diagnosis since we had NO idea about her CF during that time.
Once that therapist retired I stopped therapy, had Anna, and two weeks later started life as a CF family. After hearing that therapy helped another CF parent I decided it was time to try again. This time I found a therapist in Carlisle who I really liked. The problem ended up being that after 6 sessions he started saying well how about you call me if you feel like you need it. He actually thought I had things TOO together. The great thing about going was that it actually helped me realize that I kind of did. Everything feels so out of control sometimes being a CF parent because you never know what is going to happen next. Going to therapy chiseled out an hour of time each week just for me. And the thing he stressed to me the most was taking MORE time for myself. He advised me do take time out to do things for myself, and not just going to the gym, but joining a book club, writing my blog, dinner with a friend, going to get a coffee by myself. I’m still working on it because as a mom you naturally put everyone else before yourself, but I’m confident I’ll find a better balance in time. Until then, I’m going to continue therapy every couple of weeks to work on handling situations that come our way. Trust me, if you take some time and just talk about your daily life to someone who doesn’t live it you will be surprised how great you’re doing just getting through the day to day that is normal life to a CF parent. If nothing else, it is a huge confidence boost and renews my fighting spirit. The only downside – I have to convince my therapist that I need to keep coming!