My #1 Tip for Moms Raising Babies with Extra Needs
By Shana Bull
Zelle Duda for Unsplash
When my son was just a few weeks old, my husband and I received a phone call from a doctor telling us that our newborn was diagnosed with cystic fibrosis (CF).
CF is an inherited disease that causes damage to the lungs, digestive system, and other organs. Before modern medicine, this disorder was an early death sentence. In fact, my 6-year-old might not be alive right now if he had been born thirty years earlier. Just writing that infuses me with such gratitude that he was born in an era with a real chance of having a long and healthy life.
There was a steep learning curve for caring for a new baby with extra needs: complicated feeding routines to implement and additional check-ups to maintain, as well as weekly weigh-ins and long CF clinic appointments. Not to mention the countless hours on the phone juggling insurance calls and pharmacy orders—and, of course, all the typical baby needs on top of that.
Because I worked full-time from home as a social media educator and writer, and my husband commuted, this meant that most of the caregiving duties fell on me. Here are the habits that allowed me to tend to myself—so that I could better care for my baby with extra needs.
Dealing with Isolation
After my son was born, I found myself feeling isolated. For much of that first year, my favorite part of the month was going to a local marketing group’s board meetings. My mom would watch my little guy and I would take a shower, get dressed, and feel like a real-life human, if only for a brief period of time once per month. Because of CF, we couldn’t send him to daycare until he was 2, and he was almost 1 year old when we found a sitter to watch him a few hours a week.
Those few hours became invaluable to me. And I made sure to use up every second of my time alone.
Planning the Month Ahead—My #1 Tip
Having a kid with extra needs meant that I utilized my project management skills to ensure both my husband and I were aware of things like upcoming doctor’s appointments and when additional medicine needed to be ordered.
Much of my time as a new mom was spent sitting down with a physical calendar, organizing dates and reminders, and then adding them to a joint calendar. This helped to keep my husband informed so he could ask for time off or work from home when needed, since he worked so far away.
The most significant habit we created was focused communication.
At the end of the month, we would sit down during our son’s nap and go over the month ahead. My husband would let me know of any far-away meetings, and I would keep him up-to-date on doctor’s appointments and my own events. Even though we would inevitably falter with some of our communication, we tried our best to keep each other up to speed.
This habit was useful at the beginning of the pandemic, too, when we found ourselves both working from home, and our preschooler with us all day.
Learning to Ask for Help
When my son was a baby, it looked to others like I “had it all.” My social media accounts were a strategically crafted peek into what I wanted to show. A working mom who could turn a trip to one restaurant into a week’s worth of content.
I was scared of losing clients and of people perceiving me differently because I was the mom of a kid with extra needs, so I pretended like I was handling everything OK (while still letting people know what was going on with his CF diagnosis).
I was scared of losing clients and of people perceiving me differently because I was the mom of a kid with extra needs, so I pretended like I was handling everything OK.
The truth was that the only thing keeping me going was being able to plan ahead with my husband so I didn’t completely drown in the doctor’s appointments, pharmacy visits, loneliness, and my eventual diagnosis of postpartum depression.
Because I let everyone think things were OK behind the scenes, I didn’t have the opportunity to really connect with friends who might have reached out more if they knew I needed support. No one reached out because no one thought they needed to. I didn’t talk about my own diagnosis, or how alone I felt.
I am not sure if anyone is truly prepared for the feelings that come along with being a new parent and losing their own identity. I sure wasn’t.
I started questioning if I would only ever feel like myself the one time a month I was able to get away. Were these feelings temporary? What did I even do prior to having a kid? Why did I feel the need to pretend everything was okay on social media?
During this time, I gained a lot of weight. I had to stop breastfeeding because it didn’t provide enough calories for my son. That, combined with the postpartum depression medicine I was taking, as well as not moving around as much as I did pre-baby, led to my gaining more weight than I did when I was pregnant in the first place.
Creating Habits that Stick
Once I realized that the weight gain and isolation were intensifying my postpartum depression, I started forming habits to work on both of them. I created a game plan to start working out with PopSugar fitness YouTube videos.
Soon I found myself working out to the videos in five-minute segments during breakfast time while my son was doing his nebulizer in the living room, and I began eating a healthy meal before I went to any networking events so the cheeseboards couldn’t tempt me as strongly.
At the same time, when we were able to get the sitter for a few hours per week, I was able to focus on my own work and see more clients. When I finally accepted that I could only work at 40 percent capacity because of the season of motherhood I was in, I was able to feel more inspired about the work I was doing.
Aim for Small Tasks
When you have little time to work, planning ahead allows you to maximize the time you have. Each week I broke down deadlines and goals into smaller tasks for the day. (Post-pregnancy brain fog is real, everyone!) I gave myself a three-task maximum for each day so I could feel good about accomplishing them all in the short amount of time I had.
I broke down deadlines and goals into smaller tasks for the day. I gave myself a three-task maximum each day so I could feel good about accomplishing them all in the short amount of time I had.
Creating these small habits meant that they were easier to check off, and they became the ones that stuck with me the longest. Habits like focusing on small workouts versus hour-long sweat sessions have helped me with both my physical and mental health through the years. Working from a list I created at the beginning of the week helps me to focus on moving my business forward—even if it isn’t as fast as my pre-kid self would have wanted.
While now, six years in, even as most days I feel like myself again, it still takes ongoing work to plan ahead and communicate with friends and family members. I am still my son’s main caregiver, but thankfully I now have a village to help… Because I gathered the strength to ask for it and stop pretending like everything was okay on social media (and in my own mind).
Shana Bull is a best-selling children's book author, writer, and digital marketing educator. She is passionate about low-alcohol wines, elaborate cheese boards, and traveling on food adventures with her husband and redheaded kindergartener (the co-author of their children’s book—Randall the Blue Spider Goes Surfing). Follow her on Instagram and Twitter at @sharayray.
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