I never pictured myself as a stay-at-home mom. Before I had kids, I always assumed that after taking the standard maternity leave, I would carry on working, and use a trusted babysitter until they reached school age. And so I did when our first son was born. When he was two months old, I drove him to his first day at daycare, kissed him goodbye, and then went back to my car where I bawled my eyes out for 20 minutes before I pulled myself together and drove to work. After that first day, it got easier, and life pretty much met my expectations of what motherhood would be like.
And then my daughter was born in 2006. She was diagnosed with a rare genetic condition called Oto-Palatal-Digital (OPD) Syndrome, spent three months in the neonatal intensive care unit, and came home with enough medical equipment to make our small apartment look like a mini-hospital wing. She was fed through a G-tube and had severe reflux. She required lots of suctioning so she wouldn’t aspirate when she vomited, and because she was at risk for aspirating at night, the doctors wanted her to sleep on her stomach, which required her to sleep with an apnea monitor.
With all of those issues, there was no daycare around that would take her, and honestly, I wouldn’t have been comfortable leaving her with anyone. She was just too medically fragile. So, I said goodbye to the working world and began my new chapter as a stay-at-home mom.
I stayed at home for several years, and during that time we had two more kids. My youngest was also born with OPD and required even more medical care than his sister did when we first brought her home. I missed working, but there was no way I could hold down a job with all the appointments, therapies, and illnesses that kept popping up.
Over time, as the kids got older, their medical issues improved to a degree where I felt comfortable easing myself back into the working world. I consider myself a decent multitasker, so I was pretty confident that I could juggle the role of working mom and caregiver fairly well.
I was quickly slapped back into reality within the first few months. One kid got sick. My daughter who is on the Autism spectrum started having multiple behavioral issues to the point where we had to pick her up early from school too many times than I care to count. Then another kid got sick.
As far as juggling everything, not only was I dropping balls left and right at home and at work, I felt like more balls were getting pelted at me from all directions. I felt like the ultimate failure, because I know several parents who have children with special needs, and not only do they manage to “do it all,” they do it really well. What was my problem? It was a humbling experience for me to realize that I had bitten off more than I could chew, but my kids always come first, so I ended up handing in my resignation.
Life Outside the Box
Life as the parent of a child with special needs requires living life outside of the box. I may not be able to hold down a job with regular hours for the foreseeable future, but I was determined to do something productive while my kids are in school, so I went back to school myself.
I am currently in school full time, which is a bit more flexible than a 9 to 5 job, but it still has its challenges. I’ve had to miss a couple of classes here and there due to my daughter’s behavior issues, and, of course, when the kids are sick. For the most part, my professors have been understanding, and I’ve been able to make up for some of the missed classes. I have also been lucky enough to find a few freelance writing gigs, which allow me to make some extra money from home.
Life will always be a juggling act; that is just our reality. For now, I am just happy that I am able to juggle.