I want to be clear. This is not meant to be a claim that parents with chronic illnesses have it way worse than parents without. This is not an event in the weird, never-ending sport of competitive parenting where moms and dads fight it out to see who has had less sleep or a harder time potty training.
This is for those with chronic illnesses who are terrified to become parents because of their illness. This is for parents with chronic illnesses who think they aren’t succeeding or that their kids are missing out or carry constant guilt around from being sick. This is to remind all the parents out there who are juggling baby food and carpools and bath time and everything that goes along with kids, on top of a chronic illness, that you are damn super heroes.
Sometimes, when writing about chronic illness, it’s easy to get caught up on all the negative things that come from it. Writing can help relieve feelings of fear, grief or guilt and putting it out into the universe can help others prepare for such feelings and understand that they are not alone in those feelings, either. It’s a powerful thing. Don’t get me wrong. Those pieces are great. I have authored some myself. But this isn’t that kind of piece.
According to Wikipedia (the all-knowing source), a superhero is dedicated to fighting crime, protecting the public and usually battling supervillains. A parent with a chronic illness is no different. Look:
A [superhero] parent with a chronic illness is dedicated to fighting [crime], protecting [the public] her family and usually battling [supervillains] an illness. Basically the same, right?
I am speaking as a mom with Crohn’s disease and endometriosis. I was diagnosed with Crohn’s when I was 12 years old and endometriosis when I was 23 years old, so it’s hard to imagine a time before I was sick. I know my story of parenthood isn’t everyone’s story. However, sharing our experiences, positive and negative and everything in between, in the chronic illness community is essential.
With a chronic illness, it’s not just deciding to have a child and then going for it. There is so much to think about, to consider, to organize. It was a discussion with my husband on the chances of our child having IBD (about 5-7 percent). It was a discussion with my GI doctor on if the medications I was on were safe to stay on while trying to conceive and safe to stay on while breastfeeding. It was a discussion of how I might feel during pregnancy and what plan of action we would take if my Crohn’s started to flare (one-third of women with IBD flare, one-third get better and one-third feel the same during pregnancy, so it’s a total crapshoot). It was a discussion with my GYN on stopping birth control (which I use to treat my endometriosis) and how long I could be off it before the chances of endo symptoms coming back increased. It was a discussion about the possibility of infertility. It was finding another doctor to add to my mix – a maternal/fetal medicine specialist, as having Crohn’s automatically made me a high-risk pregnancy. It was talking to other moms with IBD about their choices and their experiences. Together, my husband and I eagerly and cautiously moved forward with all of this, as the excitement built at the thought of growing our family. Getting through these initial steps qualifies for at least level one superhero status, right?
I was lucky, I can fully admit that. I was able to get pregnant pretty quickly. I had a small flare of my Crohn’s in my first trimester, but generally felt pretty great after that. This isn’t to say that it was an easy, breezy nine months. There was fear that I could go into pre-term labor. There was constant concern about her size and growth the entire pregnancy. At one point, her head size dropped so low that I needed to be screened for Zika and have a fetal MRI to check on her brain development. I was well on my way to next-level superhero status. Spoiler alert – my daughter was born at 40 weeks exactly with a perfect head and brain and is still thriving today.
Next up was actually caring for and raising a child. When my daughter was first born, my Crohn’s disease flared. I had a newborn baby and was crawling to the bathroom in tears because of pain. I knew this was a possibility. I had to bring her to my infusion appointments. It was a treatment I needed every six weeks and I couldn’t miss it. She came with me. An hour drive to the appointment with a newborn (we’re talking a few days old) wasn’t how I dreamed my first week with a child would be, but managing an illness as a parent simply has to be a priority. It’s beyond difficult, let me tell you, but you are both better off if you put your own health first.
My husband went back to work after three weeks. It was just me and her for the rest of my maternity leave, home alone and yes, we had some scary moments. I learned very quickly, though, just how resilient she is. Whether she was born this way or adjusted herself to my situation, I will never know. A turning point for me was when she clearly wanted to be held, but I had to run to the bathroom urgently. Not old enough to sit on her own and not wanting to lay her on the bathroom floor, I laid her in the Pack n Play in the living room and ran to the bathroom before having an accident. Her cries broke my heart and made me cry that I couldn’t be there when she needed me. My one job as a mother! Soon, she quieted down. When I came out of the bathroom finally, I found that she had spit up all over. It was pouring over the sides, through the mesh walls of this makeshift crib. I was devastated. I started hysterically crying. I wasn’t there for her when she needed me and she had to just sit and wait in this mess because of my disease. But you know what? She was OK. Once I settled myself down, I realized that she wasn’t crying. Babies spit up. It’s part of their routine as a newborn. In that moment, I knew we could survive this.
My daughter is now just over a year old. My husband and I survived our first year of parenting, our first year of juggling two full-time jobs, a move to a new house and everything in between. Perhaps most importantly, we both survived adding another obstacle to keeping me healthy. This isn’t to say that my daughter is an obstacle – she is a light and brings more joy than I ever could have imagined. But parenting while perpetually sick, that is tough work.
Yes, there are days when I am too tired to play with her and simply lay on the couch. One of her favorite activities is crawling over me if I’m on the floor or sitting on my lap and clapping. There are moments when I feel guilty that I can’t chase her or throw her in the air, which she loves, too. There are times when I know she’d love to go for a walk, but I don’t think I can do it for fear of having an accident. As time moves along though, I am seeing more and more of what an incredible person she is becoming. At this point, she has no idea about my chronic illness. She knows that sometimes she gets to play outside the bathroom for a while. She knows that leaving the house takes a long time (though I’m pretty sure any parent can say that). She is learning patience. She is witnessing resilience. She is becoming adaptable. I’m not sure what parent wouldn’t want that for their child.
Parenthood, no matter the circumstances, is hard. Damn hard. Not to say it isn’t rewarding and profound and inexplicably amazing, but don’t let anyone tell you it’s not hard. Throw a chronic condition into the mix, and man, you’ve got yourself a party. It’s more to juggle. I have my medications, my infusions, my medical appointments. I have to arm myself appropriately as kids are literal germ factories and being immune-compromised makes that an additional challenge. Being a parent with a chronic illness has taught me to put my pride aside and ask for help. For so long, I felt determined to prove that I could handle things on my own, sick or not.
In a strange twist, having a chronic illness as a parent can be a weird gift. I know my priorities. I know my limits. Sometimes I am so distracted by my daughter’s needs that I let go of some of the anxiety that used to plague me.
I don’t often talk about how great I am, let alone write about it. But with so much going on in the world, I thought it would be good to remind all the parents with chronic illnesses out there just how amazing, strong and badass we really are. No matter what – whether you are parenting from the couch or sprawled out on the floor unable to move or helping your kid fly like a superhero – you are rocking this whole parent thing. Kudos to you.
We are fighters, fighting for our health and our lives. We are protectors of our families, of our kids and of our own needs. We battle the constant impact of our diseases on a daily basis. But we survive. We thrive. We continue on and raise incredible kids. True superheroes, in my opinion.