True life: I missed 229 days of my kid’s lives

Downstairs, on the other side of my closed bedroom door, there was an eruption of laughter. The other five members of my family were relishing a moment I was not a part of. I was in bed, barely awake, wondering what was going on.

My four children, who would routinely yell “Mom!” when they scraped their knee or a sibling spat transpired or a shoe became misplaced or a rogue basketball to the face caused tears—now yell something different.

Instead, from my bed, I heard “Dad!” or the name of one of many amazing grandparents or neighbors or friends who had been a constant form of support, love and help for our family over the past few months. Whenever I was able to hear a, “Dad, guess what!”, I would strain to hear the news from under my covers.

Imagine, for a moment, missing your whole life for 229 days. What a bizarre curse, right? That’s what happened to me. I was removed from my place in the driver’s seat and I involuntarily placed my entire to-do list squarely in the hands of others—while I lay hurting in my bed.

Out of the clear blue sky, with zero prior warning, one morning when I woke up:

I was no longer the kisser of boo-boos, the knower of all things, the driver to preschool.

I was not the soccer mom or the flag football mom or the dance mom or the swim mom or the basketball mom.

I was not the cooker of meals, the baker of cookies, the helper of homework, the counselor of woes.

I was not the mom at the bus stop kissing my kids goodbye, the exercising role-model, the picnic maker, the joy-giver.

I was not the fight mediator, the therapist, the teacher-emailer, the sport-register-er, the carpool converser.

I was not the laundry do-er, the bed maker, the floor sweeper, the counter wiper, the basement tidier, the bathroom cleaner.

I was not the weekly schedule keeper, the birthday gift buyer, the manager of all the “special” days of school (i.e. pajama day).

I was also not the fun wife, the celebrating friend, the present daughter, the thoughtful sister, the helpful school event committee member.

And while it was only seven months, it was seven months. I actually missed bits of all four seasons—the end of spring, all of summer, all of fall and half of winter. Instead of going to the gym and to birthday parties, I was in my bed or in countless doctor’s offices and emergency rooms and hospital beds, experiencing explosive, soul-crushing, unbearable pain.

Important games that I normally would have observed from the vantage point of a sideline now were recorded snippets sent from my husband and thoughtful friends, that I watched and cheered through my tears.

This was my life in 2018.

I was bounced from doctor to doctor trying to make sense of my symptoms. We’d wondered if it were Lyme Disease or another tick-borne illness. Or perhaps it was a mosquito bite that carried an awful disease? Then we thought it might be viral meningitis. I’d been told my brain was behaving as if I’d had a concussion or a traumatic brain injury… without any insult.

Then we moved on to maybe it was a neurotropic virus that was attacking my brain. Not one specialist knew what was going on with me or how to classify my pain—for month after excruciating month. But in seeking a second opinion, we confirmed our data-backed suspicion that perhaps this was connected to my birth control—a Mirena IUD.

Sure enough, that was it and I was finally given a diagnosis by an incredible neurologist. Intracranial Hypertension from my hormonal birth control medical device.

But do you know something beautiful?

Moms see other moms. Moms know all that moms do and all that they need. Dads too. And there was a deluge. There was a village of a thousand faces who showed up for our family and filled those roles for our kids on what felt like a thousand different days in a thousand different ways.

Some were my very best friends I knew would always be by my side, and other people I became close with because I had fallen sick. Some of these assists I know about and I’m sure there are countless others that I’m not even aware of.

Dear friends and neighbors who hugged my kids when they fell or shared their packed lunches at the pool. Who cheered for my kids at games. Who texted me when my little ones did something special or cute. Who high-fived my guys after they tried their best in whichever activity was in season. For all of this and more—my heart and soul are deeply grateful.

As I’ve come up for air in the aftermath of it all, there have been many lessons waiting for me. Letting go of the whats and whens and hows and whys have been both unnatural and illuminating all at once. I am not a perfectionist in the true sense of the word, but, upon reflection, I guess I do like things done the way I like things done. (Ahem, does that make me a perfectionist?)

There was no energy or time or capacity to notice this for months and months but now that I am coming back to life, with this new set of eyes and appreciation in my heart, the truth is, really, the majority of things we worry about don’t matter.

I’m also learning to live in real time. The truth is, my fun-loving husband kept our family afloat and then some. While he and I share common values in life and parenthood, our approaches have often been different. I’m more of a by-the-book rule follower and he’s more of an ice-cream-for-dinner-and-stay-up-late kind of parent.

I rock the day-to-day, he brings the magic. It’s a balance we both need in the other. He can totally handle the day-to-day just as I can create magic, but by nature, we are fundamentally different. These differences, prior to this life-changing illness, sometimes bred quibbles.

But guess what? Time has gone by and seven-plus months later—the kids are doing just fine. They may have been bathed less or gotten less sleep or eaten more ice cream, but, they’re okay.

I now know that it’s okay to accept help from your people, mamas, and I wish I realized that sooner.

It’s okay to rest and heal when you need to and let someone else take over for a bit. Other approaches or schedules (or lack thereof) are not only acceptable, they’re necessary—both for our kiddos to become flexible and for us parents to learn and grow.

It’s okay to let people see you when you’re down—to bravely and vulnerably ask for a hand.

I missed loads of joyful and stressful moments these last 229 days—time I can never get back. But my children thrived, thanks to my husband and my village. Thank you. ✨

You might also like:

• I can’t thank you enough: A love letter to my village
• Mothers try to do the work of many, but one person does not make a village
• To my village: Thank you for helping to shape me as a mother