Motherhood Before and After Life Saving Treatment
Last updated: January 2023
There’s a four year age gap between my two boys–and for a very good reason. Once my eldest was born 5 years ago, life with CF really hit me hard, like super hard. My lung function and weight steadily declined, while my chronic pain and frequent hemoptysis miserably increased. Trikafta came just in the nick of time to help me get back on my feet. Once I improved with the help of Trikafta, we were given another unexpected opportunity to grow our family, welcoming our second son last year. That being said, we have parented both our sons in two very different CF landscapes: before highly effective treatments like Trikafta and after the life-changing medication.
Daily grind of motherhood
The daily routine of motherhood is a busy one, especially when you manage CF in the midst of raising children. Although I loved being a mom before Trikafta, it was hard. It was incredibly difficult to physically care for our son through chronic coughing and infections, haul around a 20 lb baby with low lung function, and find the time and space to care for myself properly. Each day, I felt like the love for my child was the only force pushing me forward.
In comparison, caring for a baby daily while taking Trikafta is still a challenge, but not to the same caliber. Because I no longer cough violently all day or experience the same degree of hemoptysis, in that sense is it easier. I save a lot of energy from not coughing all day and night. Certainly, I feel better and my health is more stable, something I am so thankful for.
However, in some sense this experience of motherhood is similar. Possibly, I am just better prepared and more experienced as a second time mom. For example, I still have a huge treatment burden, struggle with my weight while breastfeeding, and have gone through 2 rounds of IVs since my son was born less than a year ago. Motherhood is never easy, but it’s still the most joyful journey there is.
Looking to the future
In reality when my eldest son was around 2 years old and I was experiencing a significant decline, I couldn’t say whether or not I would be there to see him go to middle school, graduate college, or create a family of his own. I just didn’t know if it was possible, or what my state of health would be if I did manage to make it that far. Truly, I felt my time was limited. I didn’t know to what extent, but sooner or later CF would kill me. It was such a hard reality and thought process to mull over with such a small child to care for. Pain, grief, and worry were emotions that clouded my vision of our future together almost endlessly.
Although I can’t predict the future, with our second son, I feel a new sense of reassurance that I am healthier than ever before. I have a new sense of determination to see them reach all those happy milestones like I mentioned above. I want to be there every step of the way, and I truly think I will be there. When I think about the future of my kids and I, it isn’t exactly clear, but also it isn’t a punch in the gut like it once was. I welcome birthdays, holidays, and new phases because I know that if I continue doing my best there are tools and treatments coming to help me along the way.
A note to other mothers
One of the biggest joys of motherhood post-Trikafta is to be a part of and witness the Trikafta Baby Boom that has occurred. It brings me so much happiness to know there’s more and more women with CF who are able to become moms. It also brings me joy to know these mamas are mamas that are undoubtedly healthier and more stable with brighter and longer futures. My hope is that Trikafta is just the start of a rich community of CF motherhood.
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