Ask any parent … having a newborn baby is hard. First-time parent? Even harder. Throw in an unexpected diagnosis of a life-changing chronic illness, and you are in for a roller coaster of a ride.
I was not prepared for the phone call that I received from my daughter's pediatrician when she was 2 weeks old. “Your daughter's newborn screening results are in. She tested positive for cystic fibrosis. A specialist will call you soon to set up an appointment. Have a nice day. Goodbye.”
Talk about the shock of a lifetime. Words cannot express the multitude of emotions I felt after that call. I had no idea about the journey I was about to embark on, including my impending transition from an ordinary mom to a mom of a child with CF.
I grieved. I learned firsthand that in receiving a serious diagnosis for yourself or a loved one, you grieve just as you would with any other loss. Elisabeth Kubler-Ross identified five common stages or reactions that people may go through: denial, anger, bargaining, depression, and acceptance. You may pass through these stages in any order and for different amounts of time.
I quickly realized that when it came to managing CF, I needed to recognize what I could control and what I could not. Work as hard as you can to keep your child healthy, but know that there is only so much you can control.
Here's what I learned about putting on my own life vest first:
- Be gentle with yourself. Many moms can relate to having “mom guilt” and wanting to do everything they possibly can to protect their child. This can be even more extreme for parents of a child with CF. I had to accept that sometimes my child will get sick no matter how much I try to protect her, and it is not my fault.
- Understand that everyone grieves differently. I found that my friends and family did not react the way that I expected to the news of my child's diagnosis. Many people felt uncomfortable and did not know what to do or say. I found it best to communicate my needs for support to those who were closest to me instead of making assumptions and feeling let down.
- Arm yourself with knowledge. Learn more about the science behind the disease and be aware of treatments that are coming down the pipeline. Attend the North American CF Conference (NACFC) put on by the Cystic Fibrosis Foundation, either in person or virtually. Set up your online newsfeed to alert you of new reputable research updates. I attended a NACFC and two CF Volunteer Leadership Conferences in person and was so inspired.
- Make a difference. Get involved with your local CF Foundation chapter. Even if you can't attend events in person, there is work that you can do from home. Feeling that you are a part of the fight can be extremely empowering.
- Connect with others who are in your shoes. CF can be a very isolating disease because of its rarity and the precautions that need to be taken for infection control. I connected with other CF parents, but -- even more importantly for me -- I connected with adults with CF. This allowed me to see a glimpse into a possible future where my daughter could still live a fulfilling life. I am forever grateful to the support of many in the CF community, but especially to Somer Love, Ronnie Sharpe, and Lauren Bombardier. Their strength and passion never cease to amaze me.
- Take care of your emotional well-being. People with chronic illness and caregivers of those with a chronic illness have an increased risk for depression and anxiety. The CF Foundation has recently implemented guidelines for optional screenings for both people with CF and caregivers at regular clinic appointments. Ask if this is available at your CF clinic. Be a model for your child by taking care of your mental health first.
- Remember that you are a parent, and a person first! There is a lot to learn and manage with CF, and it can become all-encompassing. Sometimes it was all I wanted to talk about, but other times I just wanted to be a normal mom. I had to find this balance for myself. I found the poem Welcome to Holland to be an accurate reflection on this experience. Over time, CF became less of a focus in our house and just part of the normal routine. CF does not define our family. It is just one small part that makes us unique.