Social media makes it easy for everyone to feel like they’re falling short in any number of ways, and moms are often hit especially hard by posts that paint a seemingly picture-perfect perspective of motherhood.
And sometimes, social posts about another mom’s parenting journey punch you in the gut and make you re-evaluate your own.
Case in point: a friend from grad school moved from Fargo to Oregon after a divorce, met and married a wonderful man and welcomed a new baby — and her last one — just one month after we welcomed our third and final child. Both our kids were born just months before the pandemic started, so I watched virtually as our babies began hitting milestones around the same time.
Then, a post I will never forget: shortly after Juniper celebrated turning 6 months old, she was diagnosed with Infantile Spasms (IS), a form of epilepsy that causes a baby to have seizures often in a series of short spasms. Juniper’s parents, Hailey and Derek, feared overreacting to the situation yet risked being labeled as paranoid parents by taking Juniper to the emergency room. After multiple doctors examined Juniper, they referred the family to a neurologist and reassured them the situation wasn't an emergency and likely wouldn’t have long-term effects.
They weren’t convinced, did some Googling about what they had observed, and instead took Juniper to a children’s hospital nearly two hours away but had specialists in IS. Within hours, Juniper was correctly diagnosed with an additional condition called hypsarrhythmia, which describes EEG findings of her brain as random or chaotic and is catastrophic to her development. Hailey and Derek sought immediate treatment, which came in the form of steroid injections (which failed) as well as a medical ketogenic diet (which also failed to stop the seizures). When Juniper was 9 months old, she and her family traveled to UCLA so she could be evaluated as a possible candidate for brain surgery.
Nine months old.
At nine months old, my baby was trying to figure out crawling, putting every toy in his mouth and pulling himself up to standing. I was trying to figure out how to get him to nap better, how to play independently for even the briefest of time, and worrying about how badly his latest tooth breaking through would disrupt his sleep.
Brain surgery was the farthest thing from my parenting journey. Yet each time I read Hailey’s posts as she began documenting Juniper’s journey, my stomach lurched and my heart dropped. It was just so unfair. Why should she have to be dealing with such monumental medical issues when so many others, myself included, have never had to? I watched in awe as she and her family soldiered on, seeking help and relief for their baby.
Hailey and Derek opted for Juniper to have brain surgery to remove the portion of her brain where the spasms seemed to be happening most frequently and could be doing the most damage. I cheered for them from afar as they seemed to enjoy some semblance of relief and normalcy (granted, still during a global pandemic, so there’s that) in their family, which also includes Juniper’s half brothers, Wyatt and Nolan.
Then, more devastation.
Just as Juniper celebrated her first birthday “ONE-derwoman” style, Hailey shared that the spasms had returned and another brain surgery was likely on the horizon. So as her baby was facing another battery of medical tests, hospital stays and ANOTHER possible brain surgery, my son was walking all over our house and playing with a remote control car. I was incredulous. And devastated for them. Heartbroken. Sad.
Grateful that my baby wasn’t struggling with anything close to what Juniper was, yet guilty because I’d taken my pretty uneventful parenting journey for granted.
I’ll never forget how I felt reading Hailey’s post about how Juniper had never reached her arms up for Hailey to pick her up. Up until that moment, I had been frustrated nearly every time my son did that because it was yet another way he was showing his clinginess, his dependence on me. I felt guilty immediately that I hadn’t seen what a gift it was that my son wanted me and could demonstrate that by asking me to pick him up.
Now, thinking of that post keeps me focused on that gift (although, admittedly, it’s still very hard for me to remember that gratitude every single time he reaches for me).
The return of spasms meant Juniper would undergo an anatomical hemispherectomy to remove the remaining lobe of her brain in the hope that the seizures would stop. Now, Juniper has half a brain. Though she has permanent intellectual and physical disabilities, Juniper continues to develop on her own time and is the happiest baby ever, Hailey said. Unfortunately, she continues to experience seizures and has hundreds of spasms a day.
When I talked to Hailey and Derek in June, they shared the details of their daughter’s medical journey matter of factly. It was only when I started to ask questions about how they were coping, how their sons had been affected, how they were planning for the future that emotions broke through.
“It’s been overwhelming,” Hailey said frankly. Despite that, Hailey and Derek continue to advocate for their daughter’s health and have built a supportive community of other medical parents. Their boys love and accept Juniper as she is, and they’ve had lots of conversations about disabilities and acceptance of others that they wouldn’t have had if Juniper was a neurotypical child.
And then there’s me, with my neurotypical child and the usual frustrations I’ve had that pale incredibly next to Juniper’s journey. I’ve never been more in awe of another mother or prayed so hard for someone else’s child than I have for Juniper.
Every time Hailey shares another step in their journey, I can’t help but wonder if I’d be as strong, as brave, as vulnerable to share what’s happening to me, to my child, to my family amid a devastating diagnosis. I hope so, but I also pray I never have to find out.
And that’s what makes me work to be a better mom every day. Because being in awe of another mother has humbled me in ways I don’t yet fully comprehend, but I am grateful for nonetheless.
Note: You can learn more about Juniper’s journey by following the Instagram account @growing_juniper.