Being a Breadwinning Special Needs Mom: The Struggles & The Triumphs

Several Hopesters have asked me to talk more about my choice to be a working mom, while Dan stays home with the kids. That’s probably stating it positively. I’ve unfortunately had to read comments on our YouTube channel like “Where is the mother?” “Why does Dan have to do EVERYTHING for the kids?” “Kacy is on her phone 24/7 and never pays attention to her kids.”

While these were hurtful at first, and absolutely created mom guilt, I realized I haven’t done a very good job explaining to others why we chose to design our family structure the way it is. Let me repeat that – we both CHOSE to design our family this way. Furthermore, what you see on our YouTube channel is simply Dan’s perspective and 100% under his control for editing, designing and filming. This blog is more from my perspective so for those of you who haven’t been supportive of a mother working and a father staying at home to raise the kids, I hope you’re able to gain some new understanding after reading this post.

From the beginning, we knew this arrangement was a good choice for us. It fits the way we are; the way we work together…it has always just made sense for our situation. Dan worked nights and weekends as a bartender. I provided the health insurance for the family through my job as he had none. While he was an amazing flair bartender, it wasn’t going to pay the bills for therapy, schools or other things Hudsyn was going to need that insurance didn’t cover. Another reason why I chose to stay at work after Hudsyn was born was because it’s who I am…being a professional is so much of my identity and where my strengths lie. Likewise, Dan being a full-time dad is also where his skills are best used.

What do you like about being a breadwinning, working mom?  I feel really, really lucky…every day, I get to leave the house to be with other adults. I get to be outside the world of direct caregiving for a part of the day. It’s also incredible when I have a really deep conversation with another special needs family, and I know that I can help them in a very meaningful way with their future. I get extremely excited–because, I’m going to be able to give them a really cool gift, and at first, they have no idea how much easier it’s going to make their life.

I use a variety of skills that otherwise might be not used to their full capacity. 

I love creating systems that change things for the better. Making things easier, more simple and efficient are what get me out of bed in the morning. Knowing the level of overwhelm we had as brand new special needs parents, I remember what it was like to feel really lost when trying to answer questions like, “Who will care for Hudsyn if something happens to us?” “We know we can’t sustain this lack of sleep and lack of time with each other very long…how do we find the right people to build our village of support? I have built a business that helps families all over the country find the right people and answers for their situation. And, knowing that I can reduce someone’s stress level and improve their peace of mind is so rewarding.

How did having kids change things? Having Hudsyn changed everything. Up to that point, I was climbing the corporate ladder–taking on more responsibilities, making great money and hiring new team members who reported to me. Beyond being focused, work was very important in my life. I was described by many I worked with as being “smart, efficient and to the point.” I was rarely emotional about work…it was all logic and black/white decisions. It was fun to accomplish a goal with business-building strategies and tactics. I loved the team environment and everything we focused to accomplish. Free time was rarely about personal hobbies or pleasure. For fun, I used to write lists of things I wanted to accomplish for work by a certain date. I was very driven and focused.

After Hudsyn was born, everything about work faded into the background. Sitting in the NICU holding her, everything about who I was instantly vanished. I no longer cared about what was on my to-do list for the week, nor who was doing what for which project I had been working on. As I mentioned, I’d never been a very emotional person, but as soon as she was placed in my arms with wires hanging from our sides, all I did was cry from then on. In fact, it became difficult to NOT cry. All of a sudden, I was softer and a much more heart-centered person. I was now a mom and my heart had jumped out of my chest and landed in this very fragile, new human.

What was your maternity leave like?  I had three months of maternity leave, but we lost a month because Hudsyn needed to be in the hospital. She was hooked up to all kinds of machines at first…so I couldn’t hold her all the time. I missed out on bonding with her for most of that first month. And then when we went home, it was nonstop visiting and people coming in and out of the house. People bringing food, helping out…which of course we needed at the time and LOVED. But, it was also exhausting. We needed the help to be sure, but it was hard. There was zero down time and nights weren’t a respite because Hudsyn rarely slept more than 1-3 hours at a time.

We had been in counseling with a licensed therapist almost as soon as Hudsyn was born. When I had about a month left of maternity leave, I said to our therapist, “OK, I have to go back to work in a couple weeks. You need to teach me how to get better and not cry so much. I need to go back to being the old Kacy so I can function at work. Our therapist giggled. I was a little put off by her reaction…and I asked her why she was smirking. She said, “Why do you think you have to be better on a deadline?” …and that statement blew my mind. For the first time, I realized that I didn’t have to be “better” right away. I could keep working through this…and I felt a lot less pressure to deal with being the mother to Hudsyn and being back at work as two separate people. It also reminded me that I was beginning a very long marathon, one that would take me down a road I wasn’t necessarily prepared to travel.

What was it like going back to work? Exhausting! We were up all night, and then I was at work during the day. I was still pumping every two hours, and for many, many days in a row, I was getting just a couple hours of sleep. I would come home, collapse on the couch, and get a little sleep before Hudsyn was awake all night. It got a little better around six months, but our lives pretty much existed around her feeding schedule (which is normal for most infants…and she didn’t have her G-tube yet). At that time, Dan was still working nights so weekends were also difficult because I was up all day and then all night, falling even more behind on sleep before going back to work on Monday morning.

Around three months, Hudsyn started having seizures, and that threw things off again. It added a whole other level of complication, and any balance we had at that point was gone. We now had epilepsy as a diagnosis, and a whole other world of treatment and medications came into our lives. Hudsyn’s brain wasn’t well. Our hopes of having a “Miracle Baby” were shattered. Up to that point, she’d been eating fine, gaining weight and achieving her milestones for an infant. But her brain injury was winning…and all of our attention went toward her medical needs again.

To make matters worse, I had no vacation time left. I had used it for my extended maternity leave. Even though all of this was going on, I still wanted to be at work just as much as I wanted to be at home. I spent about a year being totally torn–I always wanted to be where I wasn’t.

How did you find support? Other new moms were great, but didn’t have a baby with a brain injury like we did…they just didn’t “get it.” While I was adjusting to being a new mom, I was also researching therapies, medications and anything that might help her get back to being seizure free. I was also trying to manage her care from work, but in doing so, I was stepping on Dan’s toes–he was attempting to find his new role, too, as a stay at home dad.

In that first year, my parents were able to help out a lot, but I wasn’t able to manage her care the way I wanted. I had to learn to trust that Dan was going to be a great dad, and not criticize every little thing he did that was different from the way I did it. Combine a Type-A personality, a traumatic birth and two sleep-deprived parents…and major arguments are inevitable. That year was very difficult on our marriage.

How did Damek change things?  Damek was a few years later. He was VERY unexpected–exciting, but a surprise, and definitely something that was scary after Hudsyn. But after I had him, I think it just solidified that this new way of life was how things were going to be. I was going to stay at work, Dan was going to stay at home…indefinitely. We were excited about being pregnant again, but also terrified. Yes, it’s possible to have both of those emotions at the same time! 

Thankfully, Damek’s birth was a honeymoon compared to Hudsyn’s. But, we received another big surprise after I got back from my second maternity leave…I was told my job no longer existed. Yep, I was fired. It was just a couple months after I’d had him…panic ensued again. I was glad we’d had savings to sustain us for awhile. I cannot stress enough how important an emergency fund is, folks! For about six months, my career was up in the air. I started doing freelance work and began interviewing. We again talked about changing things up and having Dan go to work full time. But even if he went into management at a bar or restaurant, we likely still needed me to work. That industry just doesn’t pay as well as the one I had been trained in. Insurance was also another huge factor that we needed. 

This was the point that God placed the faint idea of becoming a special needs financial advisor on my heart.  Interviews used to be easy for me – and jobs were always plentiful. But for whatever reason, none of them were working out this time. My heart just wasn’t in it to go back to work in an environment that offered such little flexibility and in the end, completey devalued what I’d brought to the table by letting me go immediately after coming back from maternity leave. I had also hit the proverbial glass ceiling so my income wasn’t likely to increase even if I was spending more time at work.

How has being a working mom benefitted your family? Well, aside from the financial support, if there are personal errands to run or things I can’t get to in the course of my day, Dan is availabile to complete those things…in fact he loves running errands because it gets him out of the house. This is far easier now that both kids are in school full-time. I never have to take off work to meet a service person for a home repair. I can work late at the last minute and not worry about picking up the kids from school or daycare. We don’t have daycare expenses (that’s what I call Dan’s salary). I’m able to spend more time with clients and prospects so the business can make more money in the long-run. Above all, I know Dan is there taking care of our kids. If an emergency happens with Hudsyn, my #1 guy is on the front line, and I trust him completely to manage each and every situation with her. All of our values and attention can be given to both Damek and Hudsyn when its needed most. That, to us, is invaluable.

What’s been the hardest part about being a working mom? Starting a business is one thing, but doing so when you’re the only one responsible for paying the bills is another. There was a mountain of pressure that first year and I was regularly stressed month to month. I’m sad to say my health (physical and mental) took a backseat and working 90+ hours a week became normal. Now, my business is established, so it’s a LITTLE easier than it was…but I still have to make sure my staff is paid and our clients are taken care of each week. 

My “job” is to make sure our clients are taken care of and our own bills are paid. Dan’s “job” is to be the operations director of the home. He cooks, shops, takes the kids’ to their appointments, fixes things that break, mows the lawn, etc. We’ve created equality because I typically am the one who care coordinates all of the kids’ doc appointments and therapies (scheduling, researching, asking questions of the physicians, etc). I also do a fair amount of cleaning alongside Dan to keep the house in shape each week. And, of course I enjoy playing and spending time with the kids when we have family days/outings.

I won’t lie, it’s very satisfying to earn the money. As stressful as it can be sometimes, that’s exactly what keeps me motivated and focused in our business.

Do you feel like you get judged sometimes? Of course. When I walk into a doctor’s office with Dan and the kids, and the nurse or physician only talks to me. (By the way, he’s clearly listed as the primary caregiver on all of their records and goes to 90% of the appointments alone.) When Dan accompanies me on a business trip and others think he’s the financial advisor. It’s annoying, sure. But stereotypes are challenging for all of us to overcome.  We assume things that aren’t reality. Do you ask a female you just met (who happened to tell you she’s married) what her husband’s name is instead of possibly thinking she’s in a same-sex marriage? Dan & I are a team, and we had reversed roles even before we had kids. I always wanted the career, I never cooked, and my oven was used for shoe and bag storage. Dan loved cooking, adored children and wanted nothing more than to take care of others.

At the end of the day, it doesn’t really matter what other people think. We both love our kids, but we’ve never fit the traditional “mom” & “dad” roles. I’m never going to be the mom  leading the Girl Scout troop, baking cookies or volunteering at the school. Likewise, Dan isn’t going to be the dad that coaches baseball or earns the majority of our income. For us, we’re all happy and working together to do what’s best for our kids and each other. That’s what really matters.

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