Each and every minute with our children is precious. But, for very different reasons, each and every minute of alone time holds great appeal, too. When we’re not just binge-watching Netflix (guilty), we try to pack those minutes – whether during nap time or late in the evening – with as much productivity as possible. This is the time we have to really tackle those To Do Lists. Or shower. Or eat. This is our time to use however we need or want.
But, it’s not always easy to make the most of those minutes. For example, last night. I sat down at the computer to pay bills and woke up an hour later, chin tucked deep into my chest, a less-than-graceful swan with a terrible neck ache. And not a single bill paid.
When the list at hand isn’t even getting accomplished, it makes it even harder to set aside time in those quiet moments to complete something on my “other list.” Things like:
- Swallow a handful of the 182 pills I take each week
- Complete a few of the 266 minutes of breathing treatments and airway clearance that I am prescribed weekly
- Reconnect to, refill, or calibrate one of the two medical devices that are attached to my body
- Attend (again) to the never-ending blood glucose checks and adjustments
My other list is the list of a mom who lives with Cystic Fibrosis and CF Related Diabetes. In the 1950’s, few children with this disease even lived to attend elementary school; when I was born, the average life expectancy was only 20. A generation ago, it would have been shocking to hear of a woman with CF becoming a mother. But thanks to new treatments produced through research and fundraising, life expectancies are increasing. And thanks to more widespread access to (and awareness of) fertility treatments, many women with this life-altering disease are becoming mothers. This wondrous gift and opportunity now puts us in the same boat as other mothers in various walks of the medical world who have been struggling to answer the same question we now face:
How do you balance serious health concerns and motherhood?
Well, friends. I do NOT have all the answers. My nebulizer is dusty. My prescriptions are filled way less often than they should be. My insulin pump has sat, without batteries, in my sock drawer many-a-time over the last three years. My doctor was right: Pregnancy, as it turns out, was the least of my worries. Instead, it is the months – and years – afterward that have more potential to negatively affect my health. Motherhood makes it more difficult to maintain my nutrition at near-normal levels, to monitor my blood glucose levels, to keep my lung functions from dropping. Why? Well, there’s fatigue and busyness for sure. But the bigger culprit:
My attention, my efforts, my desires: They’re focused on my child now.
However, I know that to take care of them, we must take care of us. (Yes, Mom, I could hear you yelling at the computer as you read that last paragraph.) So, here are five suggestions to help mommies dealing with chronic illness find a way to do just that.
- Involve kids in the process. Even as a toddler, my child showed immense interest in my medical devices. He is constantly trying to use the tubes of my airway clearance vest as storage for small toys, and I once found my pump clip in the printer. So, I simply redirect his interest! He helps me refill and reconnect my pump now. He holds the (unopened) infusion sets and watches for drops of insulin as I prime the tubing. He even sings to me to help me be brave when I change insertion sites. Any way that you can involve your children, do! It’s both a learning and bonding experience – and it happens while they’re awake! No loss of alone minutes needed.
- Educate them. Small children are always trying to “discipline” their parents. They parrot back the phrases they hear us use. So it’s no surprise that they can actually be pretty good at holding us accountable. I taught Oliver what the alarms on my continuous glucose monitor mean, and I encourage him to tell me to “check my sugar” when they go off. Hearing his tiny voice behind the request makes silencing and ignoring that alarm pretty difficult.
- Set routines. Consistency works. Growing up, I used to play Tetris with my mom every night while I did my breathing treatments, and it quickly became habit. Look for something in your day that always happens and find a way to work taking care of yourself into it. You may even need to bribe yourself until the routine sticks. “If I do ___________ today at the scheduled time, I will let myself eat that ice cream in the freezer later!” (Maybe you can come up with a healthier bribe. But why would you want to?)
- Multi-task. Health concerns and treatments vary widely, so you may need to get creative here. However, if you can find a way to accomplish something while taking care of yourself, you’re more likely to do the latter. Example: I do my breathing treatments while I edit photography sessions. This was working really well for me until I decided to add Gilmore Girls to the mix. The intense vibrations of my vest are too loud, and now I’m missing all the witty dialogue. Sigh. Two steps forward, one step back.
- Change your mindset. Taking care of yourself is for your children. It gives you more energy for them, and maybe even more days with them in the long run. Neglecting your health is a decision that could negatively impact the ones you love most. So, do the selfless thing and spend a few less minutes on them and a few more minutes on you.
Now, I just need to follow my own advice. Some might even say it’s time to – pardon the pun – take a dose of my own medicine.