December 12, 2022
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Photography by Daniel Kim/Design by Alexis Lira
I never imagined I’d be able to have kids. The fact that I can (and did!) is only one of the surprises.
For as long as I can remember, I have wanted to be a mom. But when faced with chronic health conditions, the thought of being a parent seemed almost impossible.
Even when I was diagnosed with fibromyalgia as a teen in 2015, I cried to my doctor, saying I was worried the pain in my shoulders and neck would be too much to carry a baby.
Just when I was finally getting control of my chronic pain, my life took a complete turn in 2019 and 2020, when I was diagnosed with multiple health conditions, including gastroparesis, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS).
I had lost the ability to eat and drink, could not drive, and could barely walk.
My health had declined so severely that I left my job and had a feeding tube placed for my main source of nutrition. The thought of having a child wasn’t even on my mind — but it was for those around me, who continually asked questions like:
I wasn’t even discussing children, let alone trying to conceive, but all of a sudden these questions mattered to family, friends, and even strangers — which then made me doubt, again, my own ability to be a mother.
Last October, my son was born, and as soon as my baby boy was placed on my chest, all those doubts dissipated.
Now that he’s 1 year old, I wanted to share some surprises, challenges, and advice about being a parent in the first year with chronic illness.
Prior to having my son, one of my biggest concerns was how I would handle my symptoms and parent at the same time.
I was almost immediately surprised by the inner strength I possessed during both my pregnancy and this first year. Even on flare-up days, I am in awe of how I can care for my son.
As someone with chronic illness, I am no stranger to having to make adaptations, and it’s no different for parenting. For example, on days when cooking is too much for me, I take advantage of low-energy ways to still provide a well-balanced meal for my son, like microwaving eggs, using frozen veggies, meal prepping in advance when I have more energy, or using a roast chicken from the grocery store for multiple meals.
Likewise, I want my son to enjoy spending time outdoors, but with my conditions, I can’t stand or be in the direct heat for too long. So I look for parks and fields that have shady spots and places to sit. I bring a blanket too, just in case there isn’t a bench, so I can sit or lie down while the baby plays.
For my treatment, I go to the infusion center once a week and have other doctor’s appointments. My infusion appointment takes about 3 hours. Finding child care during these appointments can be challenging.
When my son was smaller and not yet crawling, I would bring him to all my infusions and appointments. I usually held and fed him, and once he was sitting up on his own, I brought a portable play dome to help keep him entertained.
But once he was mobile, bringing him to infusion appointments became more difficult. So now he stays with his dad or his grandma, but if they aren’t available, I need to find a different solution.
Another challenge I’m faced with as a parent with chronic illness is bending over and picking up my son (or his toys), mostly because of my POTS. If I bend down and move too quickly, I get dizzy or have fuzzy vision.
I’ve learned to squat using my whole body rather than bending forward and leading with my head.
Other times, my fibromyalgia pain and stiffness limit how much I can lift him. If I’m super symptomatic, I’ll ask for help if we’re out and about. But I’m usually home alone with him most of the day, so in those cases, I’ll spend a lot more time playing with him on the floor rather than holding him, and I’ll wait until I feel stable enough to pick him up.
Don’t listen to others when it comes to your ability to parent: Only you know what you are capable of!
The saying, “It takes a village,” is so true when it comes to parenting. Ask people to help with watching your child so you can recharge your physical and mental health.
In addition, it helps to find other parents like you. One of the things I love about social media is connecting with the community and finding other chronically ill and disabled parents. We are able to share our experiences and learn from each other.
I feel less alone interacting with those who are going through similar phases in life.
I know this is one that so many people say and hear, but it has helped me get through my first year of motherhood.
Being a parent is exhausting. Add chronic illness to that and you’re definitely going to need a nap! Everything else can wait — go get those baby cuddles and recharge.
Anyone with a chronic illness knows that stress is a major trigger and will only make your health worse. And becoming a new parent is definitely stressful!
As new parents, we have a lot of ideas about how we want to parent, but in reality, we don’t know how parenting will go until we do it. My biggest piece of advice is to go with the flow and try not to worry about what others are doing, and focus instead on what works for you.