When I left the hospital with my first child, a brochure was tucked into my take-home folder about a mother-baby group that met every Tuesday and Thursday morning. Around week four of maternity leave, unsure what to expect, I decided to give it a whirl.
It was a godsend.
Here were other un-showered, lactating, sleep-deprived moms who actually wanted to talk about diaper brands and cracked nipples. We compared daycare research and strategies to ease our return to the workforce; or contemplated the choice to become stay-at-home parents. We traded valuable information about pacifiers, vaccinations and feeding schedules, while divulging our fears and hopes about our brand new, sometimes-crushing responsibilities.
It was a warm and fuzzy combination of playgroup and counseling session, where diaper changing, nursing and screaming infants were not only accepted, they were the norm.
When I was pregnant with kid #2, I couldn’t wait to revisit this nest of knowledge and acceptance.
Instead, after one session, I pledged never to return.
Just 48 hours after his birth, my youngest got very ill due to a congenital digestive disease we’d never heard of. On his third day of life, he required emergency surgery to allow his body to function. The NICU stay, his doctor visits and prep for a second procedure consumed most of my maternity leave.
But there were a few weeks where I could potentially attend baby group again. Where I could find that warmth and acceptance I had basked in two years before. So I went.
It hadn’t really changed. Un-showered moms still discussed diaper brands and cracked nipples. They worried about vaccinations and nap schedules. And I couldn’t stomach it.
They hadn’t changed, but, undeniably, I had. The stuff they wanted to talk about was hard for me to even listen to.
I longed to discuss the nightmare of changing a colostomy bag over a still-healing belly button and concerns that any daycare would accept my son with his special needs. I needed to vent about medical billing mishaps and fears we’d reach our son’s health insurance maximum before his second birthday.
Suddenly, changing a diaper in this circle-of-moms was nothing but awkward. No one expects you to loosen the valve on a colostomy bag to release your child’s gas, then check for leaks and squeeze excrement from the bag into a diaper. I myself would have been alarmed to witness this a few months earlier.
Before this one and only mother-baby session, I’d never changed my youngest’s diaper in front of anyone but immediate family or medical staff. Hadn’t I realized it would be uncomfortable here, in front of a group of strangers? Naively, I hadn’t. I just expected it to be cozy and inviting like it was the first time around.
I caught myself gritting my teeth as these doe-eyed young women voiced worries about their children not eating enough, even though they were within the doctor-recommended amounts. In the hospital, I had fed my son with a dropper like a baby bird because his body couldn’t handle a full half-ounce at a time. They were stressing over sleep schedules and pacifiers while I was on guard for life-threatening infections and serious blockages.
Of course I knew my son wasn’t a healthy baby, that he had unique challenges, but in this moment it hit me that I wasn’t a normal mom anymore, either.
Please don’t get me wrong. I am not in any way trying to label or even imply those mothers were petty, narrow-minded or judgey. They were none of these. And with my firstborn, I had been just like them, with my precious healthy baby and my everyday-mom concerns. They had the luxury of being blissfully normal. Never before did I relish what a luxury that had been.
Throughout the 60 minutes, I was civil and polite. I even mentioned my son’s surgery. But as the conversations bubbled around me, I felt a growing urge to scream, “You’re worrying over nothing!”
I couldn’t wait to get out of there and never return.
Today, with nine years of perspective, I know when and how to speak up (tactfully), how to find common ground, and when to keep quiet and let it roll off my back. I’ve gotten better at explaining to parents and teachers that even though my child looks perfectly healthy on the outside, there’s a lot happening in the plumbing you can’t see. There are medications and treatments and more surgeries, and a lot of my mommy friends still don’t know the half of what we deal with. But that mother-baby group gave me the first taste.
When I got home that fated day, I found a Facebook group for my son’s rare disease, Hirschsprung Disease. In no time at all, my concerns and fears were met with others who got it. Eventually, it led to opportunities for me to email and chat on the phone with other actual Hirschsprung moms, as well as an adult woman who has lived a full life with the same diagnosis. We shared valuable information about medications, therapies, treatments and surgeries, as well as colostomy bags and early indicators of infection. The online group even introduced me to ILEX, a magical barrier paste that saved my son’s skin post-surgery.
This! This was precisely the support I needed. (And still need, though today I’m more often on the side of giving advice than getting it.)
Mother-baby groups can be beautiful, welcoming places for new moms. But—for me, at least—it wasn’t helpful when dealing with the shock, grief and complicated care that comes with having a child who has special needs. In fact, it was just an hour-long reminder of how different my child was from his peers, and how much I’d changed in becoming his mother.