A Year of Resilience, Part 1

The day I began writing this, our wild wonderful girl, Iris Lee, turned 18 months old. Now she’s almost 2, but sometimes processing (and telling) a story like this takes time. And ours is still unfolding.

My pregnancy with Iris was filled with joyful anticipation and planning. I spent months dialing in my business to work on autopilot during my maternity leave so I could truly unplug. I assumed I’d be out for 6 months like I was with our firstborn, Theo, and I couldn’t wait for the time away — immersed in baby snuggles and priceless (though sleep-deprived) moments with my kiddos.

What has unfolded since has been the most difficult season of my life so far.

One of my all-time favorite quotes is from author Rebecca Campbell, “I believe that your tragedies, your losses, your sorrows, your hurt happened for you, not to you. And I bless the thing that broke you down and cracked you open because the world needs you open.”

Well, here I am — almost 2 years later — cracked wide open and finally ready to tell our story.

New Life & Butterfly Skin

Iris was born on April 3rd, 2022. Her birth showed me what amazing things my body was capable of — what I was capable of — and I just kept repeating, “I can’t believe I just did that.” If I only knew then how much our little family would be tested in the months ahead, and how strong and resilient we would all prove to be.

We were overjoyed at Iris’s arrival. We knew she was the missing piece to make our little family complete. She was everything we’d been waiting for and so much more, our little rainbow goddess, and we were just so happy to finally all be together.

The doctors noticed Iris had tongue and lip ties at birth. They told us they were nothing serious, but could make eating and speech harder for her. They recommended we do a laser surgery as soon as possible. So at 4 days old, we took Iris to a specialist who used a small laser to cut her tongue and lip tie. She bled and cried, but we held her close and she was safe.

Our homework was these awful exercises where we’d have to push her tongue and lip back multiple times a day to keep them from reattaching. Not fun by any means, but we could handle this for our girl, and it did improve her eating and seemed to make things easier for her before long.

We had a little birthday for our then 3-year-old boy Theo amidst the newborn excitement (6 days after Iris was born). We were exhausted and still finding our new rhythm as a family of 4 (plus one large fluffy pup), but we were together and that’s what mattered.

Then as Iris started teething and moving around more, we noticed blisters starting to appear on her hands and feet.

I’ve had epidermolysis bullosa my whole life, and thankfully a relatively mild case of it. I essentially have very delicate skin (they say delicate like a butterfly’s wings), mainly on my feet and ankles, and the slightest friction can create blisters. Like I said, I’ve had this my whole life. My mom has it too, and she always did an amazing job of never making it a big deal. She managed it, she taught me to manage it, and we know we’re stronger for it.

But then it happened to my baby. My beautiful, innocent baby Iris who had already been through too much in her little life.

I knew there was a 50/50 chance our kids could have it, but that didn’t really prepare me. As a parent, you do everything you can to protect your children and shield them from pain. New blisters appeared despite all our best efforts and now here was this constant and relentless reminder that I couldn’t protect her. All I could do was to teach her how to manage the pain and be strong through it all — a lesson I knew would come for my kiddos, just so much sooner than expected.

This was hard, but we could handle it together. One day at a time.

Starting School & the Cycle of Sickness

We shared a beautiful summer together as a family, tired new parents again but happy and thankful. Meanwhile, Theo — our sweet, smart, silly boy — was getting ready to start preschool. He was nervous but excited, and after all of the pandemic isolation I couldn’t wait to get my little boy some social time with his peers (and hopefully some space and time for mama too).

We had Theo’s “Meet & Greet” with his teacher and a couple students, and he immediately got sick. He didn’t even make it to the first actual day of school unscathed, but we figured this was normal.

I’m a stay-at-home working mama, so Theo had never been to daycare. Plus, he was a pandemic kid, and this was the first school year people weren’t wearing masks. Theo was usually pretty healthy, but this was a big change and we knew he’d get sick more when he started school.

It all checked out.

We were disappointed he missed his 1st real day of school, but it wasn’t a huge surprise either and it was only preschool. We treated the symptoms, got him back on his feet and sent him back to finish out the first week.

Things went downhill quickly from there.

Theo developed this awful gunky congested cough. Every morning he would have these sneezes that sent yellow-green gunk shooting out of his nose (cute, I know). We started having tissue boxes within reach no matter where we were in the house. He had fevers, complained of ear pain, and just didn’t seem to have his usual energy. He wasn’t himself.

The worst were the nights. Theo would wake up screaming and crying, and when we'd rush in he was still in this groggy state where he’d be speaking nonsense we couldn’t understand. Our boy, who was usually so sweet and snuggly, didn’t want to be moved or even touched. Anything we said or did set him off. He was mean, defiant, and just kept screaming. And in the morning, he didn’t remember any of it.

Many nights, he’d get so worked up that he’d send himself into a coughing fit where he couldn’t stop and had trouble breathing. The pediatrician told us to take him in the bathroom, run the shower on the hottest setting, and let steam fill the room because steam would help his cough. So that’s what we’d do. We’d sit there in our bathroom, holding our coughing, shrieking, gasping boy as he writhed in our arms and we prayed that the episode would end (and that he wouldn’t wake up his baby sister).

These were not nightmares — we now know they were night terrors — and it’s hard to explain just how heart-wrenching and terrifying they are unless you experience it firsthand. But we didn’t know what it was at the time, and we assumed Theo was in pain. We thought, it had to be his ears, right?

We came to expect this nightly — putting the kids to bed, finishing the dishes and cleanup, showering, finally collapsing on the couch, and waiting for Theo to start screaming.

This was our new reality.

Theo just kept getting sick over and over again, except he never got better. Not really. He rarely made it through a full week of school (and he was only doing 3 half-days). We were in and out of the pediatrician’s office constantly, getting script after script for ear infections. For months.

The doctors told us this was normal.

First year of school. Pandemic kid. First year without masks. They assured us it was the toughest respiratory season in years, and we were doing the right thing. They explained to us again and again how little one’s ears aren’t designed well for drainage, so frequent ear infections happen. They’d hand us a script and we’d be on our way. Time to start another 10 day course of meds that wreaked all kinds of intestinal havoc on the kids, since poor Iris got sick every time Theo did (amidst growth spurts, teething, more blisters, and a rash from the diarrhea the meds gave her).

The doctors told us what were doing all the right things for our kids, but it didn’t feel like it.

As the holidays dawned, things weren’t getting any better. The congestion settled in, Theo’s cough persisted, and the night episodes intensified. The doctors talked about starting injections since the oral antibiotics weren’t working anymore, but decided having ear tubes surgically implanted was the right next step for Theo. They told us it was great because we wouldn’t even have to bring Theo in when he got an ear infection anymore. We would just have steroid ear drops on hand that we could use anytime his ears seemed to be draining.

We definitely weren’t excited to put our 3-year-old boy through surgery and anesthesia, but if the tubes would vent the pressure of the ear infections and help our sweet boy sleep, as the doctors promised, we thought it must be worth it.

This was really hard, but we could handle it. Together.

We quarantined from everyone — even family — over the holiday to keep Theo healthy, and his ear tubes went in 2 days after Christmas. We started the necessary drops and it did seem to help Theo be more comfortable. The night episodes weren’t quite as terrible. But they kept happening. And Theo kept getting sick. So we did the drops, as instructed, for 10 days. Except after those 10 days, Theo would come off the drops and his ears would start draining again within a day or two.

The doctors still kept assuring us it was all normal. First year of school. Pandemic kid. No masks. That time of year. Stay the course. Start the ear drops. Rinse. Repeat.

Finally after 5 months, we’d had enough. We had no idea what was making our son so sick, but we knew this was not normal. We didn’t know the right way forward, but we knew it wasn’t this endless cycle of sickness, treating the symptoms, and pumping our kids full of antibiotics. It was time to find a more holistic way forward for our family.

This is only the beginning of our healing journey, and there’s still so much more to tell. Tune in when you’re ready for Part 2.