I thought by the time I was 40 years old I would be established, having a successful career. Now, I am not sure I will ever get to have a “traditional” career. I parent two kids with disabilities, and more than anything, this has determined what my job is. 

When my youngest daughter was born with Down syndrome, we spent more time than average at doctor’s offices. My daughter had a compromised immune system and a hole in her heart. Because of her diagnosis, by the time she was six weeks old she began physical therapy, occupational therapy, and speech therapy to address some feeding issues. I knew then that the demands of having a typical job would prevent me from caring for her the way I wanted to. So I made a choice not to pursue a career and to give myself completely to helping my child.

When we adopted our middle daughter, who has cerebral palsy, our appointments and specialists and therapists doubled. 

Related: The Isolation We Feel as Parents of Kids With Disabilities

But here is the thing, I am not a very good stay-at-home parent. I don’t enjoy being a homemaker one bit. I will give as much time as necessary to prepare for an IEP meeting or fight insurance to cover medical equipment. But the reality is, I do this job out of necessity because we don’t have any other options based on a system that seems set against our children. 

Four years ago, my husband and I switched places. I jumped back into the workforce and he became the stay-at-home dad while working on his master’s degree. 

That first year I had two part-time jobs: I was a middle school Spanish teacher, and a contributing editor for The Mighty. 

When The Mighty offered me a full-time position as the Parenting Editor, I felt I had finally found my career. The job seemed perfect. It allowed me to work from home and I never had to explain having to take time off for IEP meetings, evaluations, doctor visits, etc. 

When my husband began to work full-time again, we thought, “Now that our kids are older, we can do this.” The financial stability of two working parents allowed us the opportunity to do things we had never been able to do before. It was nice not to worry about money.

It was especially nice that we were both able to do this because I had a flexible job… until it wasn’t.

Related: What Working Options Do Parents of Kids With Disabilities Have?

With both of us working full time, many other things inadvertently fell into the background. For example, I needed to apply for services both my children needed, except the process is long, tedious, and requires a lot of time, paperwork, and push. I didn’t have time to do it, neither did my husband. And that was just one thing. We still had therapy, and while I was able to take my kids to therapy, I still had to make up for those hours at work. I was often working until late at night, absent from my family.

My husband and I began to play a balancing game, trying to figure out who took time off and when. 

I took a week off before school started, planning to tackle the long and growing “to do” list that had accumulated. By the third day, I recognized there was no way I could do what I needed to get done in just one week. 

So I asked for a six-week unpaid leave.

But six weeks were not enough.

Like many other parents have had to do before me, I had to resign my job. 

My children needed to have a parent at home due to their needs, and my children are first. Always.

I had the most flexible and understanding job, and I still couldn’t do it. 

Finances are tight. Really tight. Perhaps I shouldn’t confess this, but currently we cannot afford to pay the premium to get me on my husband’s employer’s insurance. So I am uninsured (but my kids are, thank goodness).

But now, I can take the kids to therapy and not come home having to make up my hours. I can go to school and help in my daughter’s classroom, giving me a much better understanding of her education and making sure her IEP is being followed. I can help my kids with homework, take them to appointments, play games.

I am more present.

I have the time to be put on hold for 47 minutes to speak to a county worker regarding services for my kids. Or having to call several times until the right person has the answer I am looking for.

I also have time to talk to a friend for an hour on the phone (and I like doing that).

We also do the fun things, like swimming lessons, or ballet.

I also have time to meet with each teacher at the school to go through IEP goals, what needs to change, and push when necessary.

I am more involved.

I am happier.

Strangely enough, I have more time to do the work I love as a disability ministry consultant. I have been able to say yes to speaking and training, whereas I was turning down all requests before because I just didn’t have the time to add more to my plate working full-time. Now I can say yes, and I have a husband who fully supports me in this career that has resulted out of our ministry experience and having two children with disabilities. It is my true passion.

Of course I wish there were more working options that provide more stability and a reasonable paycheck for parents like me. I think most of us do. But there aren’t enough part-time positions that offer benefits or pay much more than minimum wage while allowing us to care for our kids who may need extra care.

Quitting my job was hard. 

So hard.

I cannot imagine the single parent who doesn’t have the same privilege and option of staying home. They have to work. They are on their own. What about a working option that would allow them to work part-time yet still provide for their family. That option is going to be hard to find.

I know our family is not the exception — I know countless families that find themselves in our same situation.

We press on, and we do it for our kids.

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