Lipstick, pie, and IKEA

Eloise’s first 3-4 months were dark for Brian and I. Very dark. Very very very dark.

Eloise was struggling with severe reflux provoked by extreme food intolerances. It meant she screamed for hours and hours and hours every day. Every moment she was awake and not crying, we were focused on getting her enough milk. I was pumping for 30 minutes 9 times per day. Both Brian and I were getting approximately 4 hours of sleep per night. And, of course, we were still swimming in grief from her surprise diagnosis. It was absolutely brutal.

As an outlet, I wrote a lot on facebook to our friends and families (I have since copied some of those earlier posts to this blog, but I have a long way to go before they all get here). Those days, our life was entirely lived out with Eloise in our dark, tiny little living room on the end of our blue, L-shaped couch.

So many people gave us the advice to go out, get some fresh air, just leave the house and go SOMEWHERE. But gosh it felt hard. Really really hard. Eloise hated the car so she’d scream the entire time she was in there. Any time she was awake but we weren’t feeding her meant that she was losing precious calories she desperately needed. And how in the world was I supposed to travel anywhere when I needed to pump and then store the milk somewhere?

It was too much. Too big.

A trip to the beach

One day mid May 2021, in the midst of one of my many teary days, I told Brian I really wanted to get out as a family. To do something I’d dreamed of before Eloise. I wanted to drive 10 minutes to the beach on the other side of the peninsula and just walk. Brian was skeptical. I was desperate.

So he agreed.

I don’t remember how long it took us to pack up and prepare for just that little trip. I don’t remember how we chose where we would park and walk. I don’t remember how we dressed Eloise or who held her.

What I remember was as soon as we walked from our car to the fog-covered beach, Eloise started screaming. Not whimpering. Not crying. Screaming. As if someone was stabbing her. Brian looked over at me, with a face that said, “Um. Yeah. This is exactly what I thought would happen. Can we go now?” I gave him a look, and said something like, “We WILL enjoy this moment no matter what’s happening thankyouverymuchmister.”

Awkward silence followed, full of Brian trying to humor me but not understanding the point. And me feeling mad because I knew he was right.

I think we stood there for less than 60 seconds. I tried to stay present. The sight and sound of the ocean waves hitting the sandy shore. The mist enveloping the space, tiny water droplets coating my face. The feeling of the cool breeze ruffling our clothes. The smell of seaweed filling my lungs.

It didn’t really work. Instead, all I could hear were Eloise screams ringing in my ears as they had most all day every day for months now. We were all miserable.

I believe I took a video that day, Eloise’s loud screams in the background. It’s gone now, long deleted. All that’s left from that mini trip is this single photo.

The tug of war

That was the first of many tug-of-war discussions Brian and I have had over the years since Eloise’s arrival.

It starts with me.

I want to go somewhere and do something. To feel normal. To feel like life isn’t falling apart and on fire.

Brian, sometimes, agrees.

But right before it’s time to go, nearly always there’s a good reason we should cancel.

Eloise has been having seizures. Eloise has gotten sick. Eloise has been screaming. Eloise has been having saliva attacks. Eloise hasn’t been feeling her best. The weather is cold. The roads are bad. It’s raining. She didn’t sleep well last night. We are sleep deprived.

Over and over and over again, our plans have been canceled. I would guess far more often than not. And the few times I’ve stubbornly insisted that we follow through, it usually goes badly.

This photo is from December 2021. I wanted to meet my family and go to the Tallinn Christmas Market. Brian thought we shouldn’t go because, by that time, Eloise had been having seizures. I insisted it was important we go anyway, but Brian was not enthusiastic about the trip. By the time we parked and got her in her stroller, I was ecstatic. We had made it out of the house and drove a full 30 minute with no episodes! We were going to do something normal as a family!

Within a few minutes of walking, though, Eloise had had a seizure, vomited all over herself, and started crying. She never stopped.

I asked my Mom to take a photo of us that day anyway, frowns and all. Because I hoped that surely life wouldn’t always be that bad. Someday we could look back at that time and breathe a sigh of relief, “Remember how bad that was? Whew. I am so glad things are so much better.”

Women in war

A story I heard or read somewhere.

The Yugoslav war was going on, sadly one of the bloodiest and most horrific the world had to offer. Westerners were desperate to offer some sort of help, some sort of relief. So they asked, “What can we bring you?”

The number one request of women during the Yugoslav wars? Lipstick.

Lipstick?

Yes. Lipstick.

I remember feeling confused. I thought if my country and those I loved were being murdered around me, I’d be asking for stuff like food, water, clothing, shelter, protection, etc. But lipstick?

Why lipstick?

Because, when life was crumbling around them and they were losing everyone they loved, they needed something to feel normal.

Lipstick made them feel normal. Lipstick made them feel like something in the world was okay.

The lady and the pie

Recently, someone re-posted a video on instagram. I wish I’d saved it.

This woman was making a pie and telling a story. It was about how, one year, she’d been rolling out a pie crust for a holiday dinner. In the background, from her son’s room, she could hear his machine’s alarm go off. For anyone who has been in the NICU or has a child with one or more of these machines, alarms feel pretty normal. You almost never need to worry. You just check what triggered it, respond to that prompt, turn it off, and then go back to whatever you were doing.

For this mom, since her son had a nurse with him at the time, she assumed the nurse would get it.

But the alarm didn’t stop.

Confused, the lady washed her hands and then went into her son’s room to see if the nurse needed help. She found his nurse, frozen, staring at her son. He was blue and had stopped breathing. So the mom did CPR until he began breathing again. Voila, no more alarms.

She left the room, went back to the kitchen, and continued making her pie. Tears started streaming down her face.

Why did she keep making the pie? Why didn’t she take the rest of the day off? Why didn’t she stop everything, send the nurse home, and just hold her son and weep until it was time for bed?

Because, when your kid has delays and medical issues, stuff like this happens all. the. time.

If she stopped her whole world every time an emergency happened, she and her family would never live life.

That’s why she continued making the pie — because she needed something normal to tether her to reality. She needed life to carry on even while it was falling apart.

Because, as a mom to a medically fragile kid, he may never grow out of his issues. Life may always be this hard. So you need a pie.

IKEA trip

There are a few things we need for our home renovation from IKEA. I can go with Baby K on my own during the week while Brian is at work and Eloise is at her babysitter’s, but I always prefer if Brian and I make decisions together.

Plus, as I explained to Brian, wouldn’t it be nice to go out as a family for once? Eloise has been doing better these last few weeks. She loves riding in shopping carts and making trips out. Maybe we could eat lunch there and then walk around, taking our time to pick out what we need?

Brian agreed.

Then Friday morning happened. Another seizure. And crying for hours.

Then Friday night happened. A bad seizure that needed rescue medication. And the crying that followed.

To him, it was clear, it was time to postpone, to move to another day.

To me, it was clear, we have already learned especially these last few months, that it’s never going to be the right time. We just have to make the best of it and do it now.

When everything is insane

The discussion made us notice something.

When everything is insane, Brian wants to stay at home. It’s his safe place.

When everything is insane and has been insane for awhile, I just want to fight for something different. Something that makes me feel like life will go on. That life IS going on.

Brian wants to stop time and snuggle away the problems.

I want to make a pie. I want to put on lipstick. I want to go to IKEA.

Now that Baby K is here

Many many children remember something like this growing up.

“Today’s not a good day. Mommy has a headache. We’ll go get ice cream tomorrow.”

“I know Mommy promised ice cream today but your sister is sick. We’ll go get ice cream tomorrow.”

“I’m so sorry. I know Mommy promised ice cream today and has cancelled twice already but our pipes burst and the plumber has to come today. We’ll get ice cream tomorrow.”

And on and on and on.

Until the little kid learns over time that he’s the last on the priority list — that something or someone else is always more important. He no longer believes his mom’s promises.

I know Baby K does not care, nor will he remember our IKEA trip. It’s not really about him.

But now, somehow, it is.

Though Eloise isn’t having a screaming day, she is having a seizure day. But if we cancel our plans, if we always cancel our plans, then our life, then her life, then Baby K’s life will be continually defined by Eloise’s struggles.

Before we know it, he could miss an entire childhood of memories because Eloise isn’t doing well.

I feel like we have to figure out a way forward. A way in which we love and support Eloise in her hard times. But that we also refuse to define ourselves by those dark times. That we find a way to seek out and let the light in.

Is Brian’s way better?

Maybe.

Is my way better?

Maybe.

Somehow there has to be a middle ground, a way forward. A way to pause when our kid needs CPR, and then continue making pie after.

How IKEA went today

Saturday morning began with a seizure.

Then another seizure.

Then another seizure.

“Brian, we can go to IKEA tomorrow. Or next weekend.”

“No. There’s no promise tomorrow will be better. Plus, as you mentioned, sometimes a change of scenery helps Eloise. So let’s go today after both kids wake up from a nap.”

I put on fresh clothes, tried to do damage control on my hair, and put on makeup for the first time in weeks. Then I ran around the house, gathering items for our 30 minute drive and trip to IKEA. Three pairs of clothes for Eloise in case she vomited during a seizure. Two shirts for Brian. Diapers for the kids. Rescue medication. Towels to clean up puke in the car. Bibs to catch more saliva or vomit from Eloise.

I would sit in the back with both kids to monitor her situation. If she had a seizure, Brian would pull over and we would give her meds and then resume.

Baby K woke up. I started feeding him. Then I heard sounds from her bedroom that told me she was likely having another episode. I picked up Baby K, still on my breast and rushed to the room. “Is she having a seizure?”

“Yes.”

It was a bad one. A really bad one. I started the video, put Baby K down in her crib and then went to get the rescue medication. It didn’t stop. I saw some come out of her nose and mouth, so maybe more would stop it. I got more medicine. It still didn’t stop.

I called the ambulance while Brian brought her out of the room to lay her down. Finally, 7 long minutes and a few blue spells later after the last rescue medication, Eloise’s seizure stopped.

Brian and I decided together to tell the person on the phone to cancel the ambulance. And that if another seizure happened, then we would call right away and go to the hospital for the day so she could be close to doctors and medicines just in case the seizure clusters continued.

I hung up the phone and took a deep breath.

Brian looked at me. “So. I’ve changed my mind. I think we shouldn’t go to IKEA today.”

“I think you’re right.”

“But maybe tomorrow.”

“Maybe tomorrow.”

P.S. I can’t remember the last time I put on lipstick or made a pie. But maybe I should.