Making the Choice to Stay Home After My Child's Diagnosis

In eighth grade, we were assigned to write about our dream career. Having grown up in a school with children with disabilities integrated in the mainstream classrooms, it was a natural choice to pick a career in something related to special education. I specifically chose occupational therapy, as I knew this was a field that allowed me to work directly with kids with disabilities and help them to function in a meaningful way on a day to day basis. I spent hours researching the career, and I wrote a pretty decent essay. I felt pretty strongly that one day I would become an OT, or some other similar profession.

In college, I was enticed by all the interesting courses and studies offered. I delved into sociology and philosophy and opened my mind to so much new information and knowledge. Before I really had time to consider my options, I landed my first job out of college in marketing and spent the next 12 years in that field. Along the way, I got married and had kids and was fortunate to find a part-time gig working from home. It was the best of both worlds. Balancing work and parenting was challenging at times, but with the support of my husband and a flexible boss, I was able to continue working, some years less and some years more. I was doing it all!

Four years ago my world was altered completely. There were always signs that something wasn’t quite right with my oldest child, but since he continued meeting milestones, we were pleased, even if he reached them later then other babies his age. But when he was 4, a doctor we were seeing for his growth ran a liver enzyme test and those numbers came back unusually high. One year later, he was given a diagnosis of Duchenne/Becker muscular dystrophy.

After diagnosis, we were thrust into a world of lots of specialist appointments, medical tests, new medications, deciding on mobility devices and the myriad other things that come with a medically complex child. My days were spent making appointments, going to appointments, researching the latest supplements, figuring out insurance or finding the best doctor to take my son to, and more. I had to step back from lots of my career responsibilities, and eventually had to stop working entirely. My career goals and dreams of possibly expanding my workload, or possibly even starting a new career, were put on a permanent hold. It was obvious that while my husband and I could attempt to juggle it all together, it was in my son’s best interest to have one parent fully dedicated to all of his needs.

As many stay-at-home parent can relate, when someone asks if you’re “just home,” it is never really that simple. Between shopping, cooking, cleaning, carpooling, bill paying, personal organizing (just to name a few), this is a busy role and is more the just being home. Working outside the home would only make all of that even more of a mountain to climb.When someone asks me what I do, I sometimes want to scream “everything!” but I bite my tongue and say, “I’m a stay-at-home mom.” But the hat I wear is so much more than that. Sometimes friends suggest I should be an advocate for other families with sick kids, and while I do this sometimes in an unofficial capacity, it does sound like an intriguing idea, but then it would come at the cost of being there for my son’s needs at the level that he deserves. And right now this is enough, this is more than enough. Maybe when he’s grown and hopefully healthy and independent, I can revisit the idea of having a career or my own; but for now, this is where I need to be.

And in case I ever doubt this, I have this amazing little teacher — my son. Recently, while driving to yet another appointment, I was also simultaneously taking a call about his medication. When I got off the phone he remarked, “Wow, it must be a lot for you to handle all of my needs and stuff.” and I replied, “It’s no problem honey, I’m happy to that,” to which he answered, “Well, thanks for working so hard.” That’s the best pay check bonus I could ever ask for from my unexpected, but totally accepted, career path that I am on.

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