Does anyone else who’s a mom find the question, “so what do you do?” a loaded question? When a stranger or acquaintance asks me, I hesitate with my explanation. The question is not malicious in nature, but as a “stay at home” mom of two who are under age three, I wear a lot of hats. Not only the many hats all moms wear, but my freelancer, blogger, and patient advocate hats. I also wear the patient hat, as I’ve lived with Crohn’s disease for nearly 15 years.
Living as a mom with IBD is beautiful, amazing, complicated, frustrating, and exhausting, all mixed together. Some days your disease limits you. Some days you feel like you’re letting your kids down. Some days you struggle to take care of yourself, let alone others. Juggling your own doctor’s appointments, procedures, and lab work alongside appointments for your children can feel overwhelming. Fighting the fatigue when you can barely function and the day has just begun, can feel heavy.
Since before I was married or even met my husband for that matter, I hoped to stay home with my children. Call me “old school” or whatever you prefer, but it’s something that is very important to me. I feel incredibly fortunate to witness every milestone and be by their side from the moment their eyes open, until I lay them down for bed at night. That being said, as a former news anchor and reporter, utilizing my journalism skills and abilities in a different way, is also a priority.
I’ve been able to do so through my blog, “Lights, Camera, Crohn’s” and through the IBD patient advocacy work I do. While yes, it’s work, I see these more so as passion projects. I write to be a voice for those who are too scared to share their story. I speak to offer comfort and provide hope. Finding the time to work from home when you have little to no help during the day can be challenging.
When both my children go down for their naps each afternoon, I sit down next to my computer and work until the moment I hear one of them make a peep. If I have a work call, podcast interview, or conference call, I kindly ask people to contact me during the afternoon hours when I can completely focus. This doesn’t leave me with much down time, but it does my heart good to be productive and to contribute to my family’s financial well-being. I enjoy these projects because I can write from the comfort of my couch, in pajamas, if I want to. When I do have a sitter, there’s nothing better than going to a local coffee shop, and letting the words flow from my fingertips without distraction.
Being able to keep my foot in the working world, while being home with my children, is the best of both worlds. As a woman with Crohn’s, being my own boss, often making my own deadlines, and being able to say “yes” or “no” to opportunities that come way is beneficial for countless reasons. If my Crohn’s is acting up, I can pause and take a break without questions. If I don’t feel like working one day, I won’t. I make a point of very rarely doing work after dinner. I keep my evenings for my family and for myself.
My daughter just turned one. My son will be three in March. Their ages require a great deal of attention. I’m still learning how to navigate making the most of each day. It’s empowering to be an IBD mom who’s found her way professionally and still has much to learn. The first 10 years I had Crohn’s, I suffered in silence. I never would have dreamed my life’s work would be sharing my patient journey publicly, while being a mom, but I wouldn’t have it any other way.