As a new mom, it can be difficult to balance motherhood with maintaining your cystic fibrosis care. Here are four tips that made my journey as a new mom with CF a little easier.
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Although I am very involved in my son's cystic fibrosis care, I have learned to rely on the insight and expertise of his care team when mine isn't enough.
My husband and I knew the statistics. Parents of children with chronic illnesses have above-average divorce rates. This didn't hit home until we had an opportunity to step away and realize how important nurturing our relationship really is.
In today's world, the statistics of living with a complicated disease like cystic fibrosis would have even the finest mathematicians spinning to calculate its total sum. Sometimes, I wonder how my son Alex manages it all in a life dictated by numbers.
Being a mom is a tough job; being a CF mom is an even tougher job. But, finding ways to stay organized and maintain a routine has made it a bit easier.
As a mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.
Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
As the mother of two girls with cystic fibrosis, the time-consuming routine can wear down on you and cause frustration. Although CF can be challenging, it's important that I keep my attitude toward the disease in check because I know it will ultimately shape how my kids approach their lives with CF.
When my son Sam passed away at the age of 9, people told me that the love we shared would never die. But, it wasn't until I received an unexplainable gift on the first Mother's Day after his passing that I truly believed it.