Butterflies for Madeline

Why "Butterflies for Madeline"?

I think the first connection for me was before we even knew anything was wrong. It was that trip to the zoo, where she stood on the bench.

Wearing her butterfly shirt. Her favorite place to ride was my ring sling with butterflies on it.

But it wasn't really a theme until after brain surgery when she got a giant squishmallow butterfly in the mail.

After the surgery, with all the tubes and stuff, she started sleeping on a pillow on her back. But in the night sometimes she'd roll over into the crib bars, hit her face, and wake herself up. So we started putting Butterfly there to protect her. She got butterflies and Butterfly drawn on her door. Whenever she had to go back, whether scheduled or for fever protocol, along with her books, her fuzzy pink blanket, and Dexter, we grabbed Butterfly.

I didn't discover until after the funeral that Haley, my brother's wife's sister, was the one who sent it to her.

When I walked with her in the hospital, pushing her little blue car with one hand and pulling her IV pole with the other, I'd point out her door with the butterflies every time.

I used it as a theme. Butterflies reminded me of Madeline. I bought a bunch of butterfly temporary tattoos and would put them on to show Madeline, and then apply them to her arms by request. I'd usually cut her off at one tattoo per arm. I would hide a butterfly puff sticker in each hospital room we were in. I'd put butterfly stickers on my phone case. 

I liked to imagine this was the chrysalis phase, and she was going to emerge on the other side better, stronger than before.

During The Long Winter, we decorated her crib with a paper garland with butterflies on it.

During her coma, we colored butterfly pictures to decorate her room. I bought her a butterfly Beanie Baby and her Aunt Christie brought her a different butterfly Beanie Baby.

One of her favorite movies to watch was Encanto, which has a strong butterfly theme. During her coma, I'd play it sometimes just to feel normal. I'd connect to the butterflies, to Mirabel singing "I'm waiting on a miracle," and "open your eyes." Then afterward, to the song of love and loss, "Dos Oruguitas" about two caterpillars becoming butterflies...

At the funeral, Aunt Melissa's artistic friend Courtney gave us a "Gravlin special" silk painting of a butterfly.

My grandma gifted me, Melissa, and Mom with golden butterfly necklaces.

I point out butterflies, treasure butterflies and butterfly art, and go see butterflies at the Reiman Gardens butterfly exhibit.

Because Butterflies for Madeline.

Bath Time

 Madeline LOVED baths.

When she was a baby, she'd tried to splash all the water out of her baby tub.

When she was little, she'd be in the big tub playing with her sisters, and then she'd want out, so I'd get her out and wrap her up in a towel, around her head like a hood. She'd snuggle, but after a bit she'd want down and she would then want to literally run around the house, yelling "naked baby, naked baby!" She used "naked baby" to refer to being naked.

Then a good percentage of the time, she'd go back to the tub and want back in. Often, she'd get herself back in, regardless of her wearing a diaper, or sometimes even fully in pajamas. So either I'd have to let her run around naked and risk her peeing on the floor, I'd have to help her take her diaper back off, or I'd just have to shut the bathroom door. She'd get mad.

Even when she started treatment, she still loved baths. I would basically stop bathing the other kids when Madeline was home and restricted to sponge baths following a surgery or something, so she wouldn't get jealous and upset. She wouldn't feel very good, so she often wouldn't want to stay in very long, but she had lost her body confidence, and so wouldn't get out on her own. Admittedly, I would run Epsom salt baths for her to help her body during treatment, and she'd want out, and I would either avoid her or make excuses (I have to wash your sissies first) or even just say "Nope, you need to stay in a little bit longer," to keep her in the 20 minutes the Epsom salt needed to be effective. She'd get mad.

She hated the wipes baths.

I would bathe Eloise using a plastic tub of water and just wetting my washcloth and giving Eloise a sponge bath on a bunch of towels, and Madeline would play with her plastic dishes in Eloise's bath water.

During the stem cell transplant part of treatment, she went through a chemo called thiotepa that had the chance of leeching through her skin and causing burns if it sat there. She couldn't have any stickers, including NG sticker or dressing sticker. Anyone who touched her had to have gloves and anyone who held her needed a gown. And she had to have baths about every four or six hours, even through the night, and every other bath needed to be actual water bath, not just wipes.

Eloise and I were banned, and so the night they started setting up for thiotepa, I waited until the last minute. They had bridled her NG so she didn't need the sticker, and they had made a little burn mesh "tankini" thing to hold the gauze over her port access so they didn't have the dressing sticker on either. And then they asked her if she wanted her first bath in the little toddler tub. I remember right before I went, she was butt naked except the little tankini and she ran to her toy collection and got her little plastic tea pot to play in the water and I just have this image in my head, her standing naked in the doorway of the bathroom, her back to me, patiently, expectantly waiting, plastic dishes clutched in her hands.

Finding her joy even in the trial.

I See the Light

Madeline LOVED movies. She had a serious screen addiction that I knew we would have to break someday. While in the hospital, we tried to keep it to one movie a day, up from our regular one movie a week, cause at the hospital there were no siblings, no friends, limited toys, and no going outside. What's a toddler to do? So every evening, after day rolled his computer back down the hall to her room, we'd pick a movie. (No wait Daddy!) There were movies from home, movies from the hospital library, movies available on their OneView system. Madeline didn't care much what we watched as long as we watched something, but there were ones she'd ask for more, and ones she'd pay attention to longer. She seemed to prefer movies with songs and animated movies.

The brief time she was at home, she'd ask for every movie she could think of. "Watch Tangled? Watch Encanto? Watch Frozen? Watch Avatar? Which one? Watch movie?"

I liked Encanto and Coco since they were bright with fun animations and music. She liked those and Tangled and Frozen. David does not like Frozen, but out of all of those, he preferred Tangled. So while we did try and switch it up, the old favorites came back around.

Actually, when I was with her in the PICU, I'd put Encanto on just for normalcy, because it reminded me of her.

But Tangled became Madeline like butterflies were Madeline. Courtney, Melissa's friend who's good with art, drew a little Rapunzel picture that said "Hello There" cleverly colored with Melissa's limited selection of highlighters. Child Life gave her a Rapunzel baby doll. We had these Disney books we'd read and an illustration of Rapunzel in one of them. She'd always point to the picture, then over at her toy box. "My 'Punzel? My 'Punzel?" She picked a Rapunzel LEGO set from the Ronald McDonald house toy closet. And of course, we watched Tangled a lot.

That said, nobody told us about this next bit until it happened. David's step-brother, Andy, just got married on July 2nd. It was getting late and we knew it was going to be well after 10 by the time we made the 1+ hour drive home, so once supper was over, we made the choice to skip dancing, and were making the girls use the restroom when we were called back. "There's something you have to be here for, something super important!"

Wayne (David's step-dad) took my hand and led me back around to the party, then to the fields near where the ceremony happened. I heard the DJ announce. "This is for Madeline." "I See the Light" from Tangled starts playing, you know, the scene where they're together on the boat lighting the lanterns. Andy and Kyra join us and they're pulling out and lighting these big paper lanterns to release into the darkened sky under the swollen moon and over the rolling fields.

I had held it together before this pretty well, but it all broke down then. It was a beautiful moment and I'm so thankful for how they honored Madeline.

She would have loved it.

Madeline's First Heavenly Birthday

I had to ask, originally, which date was the heavenly birthday. Was it the child's birthday after they passed, or was it the day they could arguably been "born" into heaven, that is, the date of their death?

Language I didn't need to know before. Anyway, it is in fact their birthday, after they no longer age.

It bothers me a little that she will never be three. I remember reading the test result notes, like for the xray, every day, "2yr 10mo f." She didn't even quite make two years and eleven months. But it would have been silly and painful to hang on to her just to meet that milestone.

If she had come home, we would have thrown her a banger of a party. No combined birthdays, it'd be all Madeline.

Instead, I went to the butterfly exhibit in Reiman Gardens, and celebrated my birthday with my family and a special meal, then after we walked out to her grave. Melissa brought little balloons to leave. One was Baby Shark, one was Minnie Mouse (Mickey House!), one was Anna and Elsa. She loved balloons.

I posted this on my social media:

By the Fireside : Resignation
By Henry Wadsworth Longfellow 

There is no flock, however watched and tended,
But one dead lamb is there!
There is no fireside, howsoe’er defended,
But has one vacant chair!

The air is full of farewells to the dying,
And mournings for the dead;
The heart of Rachel, for her children crying,
Will not be comforted!

Let us be patient! These severe afflictions
Not from the ground arise,
But oftentimes celestial benedictions
Assume this dark disguise.

We see but dimly through the mists and vapors;
Amid these earthly damps
What seem to us but sad, funereal tapers
May be heaven’s distant lamps.

There is no Death! What seems so is transition;
This life of mortal breath
Is but a suburb of the life elysian,
Whose portal we call Death.

She is not dead,—the child of our affection,—
But gone unto that school
Where she no longer needs our poor protection,
And Christ himself doth rule.

In that great cloister’s stillness and seclusion,
By guardian angels led,
Safe from temptation, safe from sin’s pollution,
She lives, whom we call dead.

Day after day we think what she is doing
In those bright realms of air;
Year after year, her tender steps pursuing,
Behold her grown more fair.

Thus do we walk with her, and keep unbroken
The bond which nature gives,
Thinking that our remembrance, though unspoken,
May reach her where she lives.

Not as a child shall we again behold her;
For when with raptures wild
In our embraces we again enfold her,
She will not be a child;

But a fair maiden, in her Father’s mansion,
Clothed with celestial grace;
And beautiful with all the soul’s expansion
Shall we behold her face.

And though at times impetuous with emotion
And anguish long suppressed,
The swelling heart heaves moaning like the ocean,
That cannot be at rest,—

We will be patient, and assuage the feeling
We may not wholly stay;
By silence sanctifying, not concealing,
The grief that must have way.

Will she be grown by the time I get there? Then the biggest loss of all wouldn't just be that I'm deprived of her presence here on earth, but that I lose her childhood forever, in both worlds.

Happy Heavenly Birthday, Madeline. I hope it's special somehow up there for you. Jesus, give her a hug and a kiss for us.

The Zoo

I went to Blank Park Zoo, which naturally reminded me of when I last went to the Zoo with her, July 2022.

I cried less than I expected, though she was fluttering about in the recesses of my mind the entire time.

I thought of her as I dug out a stroller for Eloise. I took the wagon for Madeline, but Eloise isn't quite that stable.

I thought of her in the gift shop where I bought her a little stuffed otter. Otters were my favorite. I actually unearthed the little stuffed otter from the collecting of stuffies that I was going to dispose of. The otters today were absent the first time we went by, but scurrying around when we passed again. I saw one slip in the pool and grabbed Eloise out of her stroller and ran down to where you could see into the pool through glass and the otter made several swoops around for us.

I thought of her in the aquarium room, which had seemed to be her favorite. I wish I remembered why I came to that conclusion. I think she was charmed especially by the glass bowl window that makes you feel like you're under water.

The time I cried, oddly, was when we were in line for the train and there was a little peaky baby with an enteral tube hanging over his shoulder, probably a G-tube. I looked at his mom's backpacks, and sure enough one had tubing hanging out of it with a brownish liquid inside. I just kept thinking of her while standing in line, thinking of what other people must have wondered about us, thinking about the times I had to tube feed her on the go like at Center Grove Orchard.

I thought of her near the butterfly bench. The picture of her standing on it is now iconic.

I thought of her while trucking around the stroller. She had largely wanted to be carried, since she was already feeling the effects of the tumor, though I didn't know it yet, but then she felt good enough to get out and push the wagon, so I was hoping she was feeling better. Thinking back, I think she actually threw up that morning, but by then I knew it wasn't the flu, so I didn't cancel our plans. I had no idea what it was, but nobody else got sick.

I would bring her up randomly. Madeline would love this. Madeline wasn't interested in this.

She should be here.

Madeline's Birth Story

Written shortly after I gave birth to Madeline. Warning, it is rather specific:

For about six weeks before I actually went into labor with Madeline, I was having false labor. I’d have random contractions, usually not more than uncomfortable, and the occasional middle-of-the-night event where I’d have contractions for several hours, but they wouldn’t get stronger and eventually I’d fall asleep.

I find random contractions very annoying.

I did NOT want to have a baby on my birthday. I was power walking in the evenings, drinking red raspberry leaf tea, trying to have this baby. As I reached five days over due, I was also starting to get worried that at some point I might need to be induced, and since I was GBS positive, I wasn’t able to just break my bag of waters or strip membranes, since those would increase the risk the baby would be exposed to GBS.

The day before my birthday, I did not power walk, just in case it actually worked this time and would go over midnight.

I woke up fairly early, before seven. I was having a few contractions, but I didn’t even think about them, since I’d been having contractions for weeks. I went on the scavenger hunt David had prepared for my birthday before the girls got up.

As the morning wore on, I realized the contractions, while not strong or frequent, were at least consistent. They weren’t going away. I read to the girls and tried to ignore them.

That afternoon I had a non-stress test as part of being overdue. The monitor they stuck on me could see my contractions. Madeline was so non stressed she slept until they poked my belly to wake her up. My midwife told me, “Well, I can’t tell you that you’re not going to have a baby on your birthday… just don’t wait too long to come in to the hospital.”

We decided to go get supper from Tropical Smoothie Cafe and then watch a movie. Mom was taking the girls so I could go get steak for my birthday, but I didn’t feel like eating that much.

By the time we got home and I’d eaten and was sitting on the exercise ball, the contractions were strong enough I couldn’t focus on the movie, which was the whole point of the movie, for me to not focus on the contractions. I wasn’t cracking jokes anymore, I felt serious. I told David I wanted to go in.

Mom stopped by with the girls as we were loading up. I was able to kiss them goodbye. I had to lean on Mom during a contraction and she’s like, “Oh yes, it’s time.”

This was my first time getting to the hospital before I was pushing. Even so, when I was in the parking garage, I had to hurry to get to the other side of a ramp and lean against the wall, since I didn’t think I could move once it started. I limped up to Birthways.

In the room, they checked me in, swiped my nose for covid, gave me antibiotics (for GBS), I spoke with my midwife who was standing safely by the door, not yet in full PPE. Alice had wanted to be there, be on call for my third, but she was recovering from a procedure in a different part of the hospital. Dawn was the one on call.

My contractions were very strong now, to the point where I was questioning my ability to deal with them. I would loop my arms around David’s neck and just drop my weight, letting my body hang, trying to relax my uterus and let it hang as well. It HURT. They told me I didn’t have to wear a mask in my room, since everyone coming in was in full PPE. It was good, because I felt like I couldn’t even breathe into David’s shoulder without feeling short of breath. I felt like I couldn’t just sit on the bed until the contraction because trying to stand up in the beginning put me behind, where I wasn’t in control of the pain. So I went to the end of the bed since I didn’t want to flash the doorway with my hospital gown, got on my knees, and just leaned on the bed.

For a moment, everyone was gone except David.

And then came a pushing contraction. I started to moan. I started to yell. I started to scream. My water broke all over the floor and the contraction wouldn’t end. My voice cracked and got hoarse and the scream went on. I thought my body was going to push the baby out right then, ripping through me. It was the most intense thing I have ever experienced.

It still didn’t feel like the contraction ended, but by the time I was able to stop screaming, the room was full of people.

“When you can, we need you to move around the side of the bed. We can’t get behind you right there,” they told me.

“I… can’t… move.”

Finally between David and a nurse, they helped me into the bed. Dawn was there and checked me. “From what I understand, you want to get an episiotomy so you don’t rip like the first time, correct?” she asked.

Well, I didn’t want one, but we had agreed to it to avoid tearing. “Yes.”

They got me flipped over. Dawn didn’t have time for pain killer, but, honestly, I couldn’t tell. I still didn’t think the contraction had really ended.

They were talking and I wasn’t entirely paying attention until I realized they were easing the baby out without me even pushing again, head, then shoulders then baby. And it was done. Without even another contraction.

They placed Madeline on my chest and she just stared at me with her wide slate-blue eyes. She didn’t even cry until a nurse said, “You have to cry,” and gave her a firm pat and Madeline let out a squawk.

And Dawn stitched me up and I delivered the afterbirth and Madeline hung out with me and nursed and there was baby number #3. The nurse, who was almost off shift, thanked me for a good delivery to end on.

Pre Madeline (before June 22, 2020)

I don't really know where to start. I find I can't bear the recent things. David was having a conversation with someone from "Walk With You" and he started the story with last August, 2022. I left the room.

So maybe I'll start with the beginning.

I was trying for my third baby a different August, in 2019. That didn't work, so we tried again the next month, with success. I realized, with some annoyance, that put the due date at June 18th. It was a good five days before my birthday, so I thought we'd avoid that, but June is a crowded month already. My birthday, our anniversary, Genevieve's birthday, Andy's birthday, Nathan's birthday, Scarlett's birthday, Christie's birthday, Melissa's birthday, Taraleh's birthday, my grandma's birthday, and her anniversary, are all in June. Added to that since is Nathan's wife, Maddie's birthday, and Andy's fiance Kyra's birthday. I decided to avoid September again forever so as to avoid June forever.

After she was born, I did "Juneday" for two years where we celebrated Genevieve's birthday, Madeline's birthday, and my birthday for good measure. I figured three birthdays made it worthy of the title. It was mostly for Genevieve, with Madeline too young to know what was going on.

My ideal birthday involves no parties, a wine bar, my mother, and cheese curds.

This year I would have decoupled them anyway, and, if Madeline were alive and home, I'd have thrown her a rager and cancelled mine completely.

But I digress.

I was sick a lot during the day into the second trimester. I used "nap time" to recline and play World of Warcraft. Reclining was the only time I felt ok.

Was my laptop on my lap a problem, a cause, an influence? I don't know.

They say you start to feel them as early as week 16 and often it will feel like "butterflies." Mine have all felt like little wiggle worms and I felt Madeline at week 15.

Like all the others, I erroneously guessed she was a boy.

Late pregnancy was difficult. My hips hurt a lot. I would do prenatal yoga stretching and try to do it every day, because it seemed to help me sleep better that night, for the pain to be less intense, come on slower. I had a body pillow.

And let's not forget the little thing that happened 2020. That was rumored late 2019, but had finally developed in the US in March of 2020.

Ugh, I thought, as the YouTube ads had morphed into actors telling me the importance of two weeks to flatten the curve and we're all in this together. I was in some sort of denial, and didn't like the reality that admitting to the existence of "the coronavirus" inferred on it. I read an article on what we knew about COVID-19 (was it even named then?) and how it affected kids. The answer, at the time, was that it didn't. Kids somehow were pretty resilient in the face of COVID, and babies even moreso. As deaths started to be counted, even here in the USA, the 0-1 age range remained at 0, and even later, single digits.

I decided to not worry about my children with no comorbidities. I was more at risk, and that was a risk I'd take. And so I chafed. I chafed at the cancelled activities and the closed playgrounds and Isabelle's second birthday where almost none of the family attended. I chafed at the temperatures taken, date stickers issued, and masks required at my appointments. I wanted all this nonsense to be over by the time I gave birth.

Naive, though I didn't know at the time.

"Love your neighbor," my midwife told me. She had her own comorbidities to worry her, and had already been present at the birth of the first COVID positive mother, wherein I believe she was dressed like an astronaut.

"If I didn't have the initiative to wear full PPE, I might not be here talking to you today," she told us.

I tried to make sure I wouldn't have to wear a mask in labor anyway. The hospital was still sporting homemade masks you could borrow at the door (PPE shortage) and I was pulling down my buff over my face. It was a lot easier for me to breathe through the single layer.

Otherwise the pregnancy was normal and low risk. I was GBS positive, which was a headache mostly because I didn't want to worry about getting there early for antibiotics.

I had a lot of prelabor. I was sure she'd come early, but she consistently didn't.

Family vacation was coming up at the end of May, and we were within that "don't go anywhere" date range. Responsibly, we sent our two older girls with Aunt Melissa. I went to an appointment and asked for an exam to see if I had dilated at all, and was told I had not.

"Ok," I told David coming out. "Let's go to Branson."

I also made sure I knew the closest hospital and what their COVID policies were. I wouldn't have to wear a mask in labor, but if we were positive, they would take the baby away. We decided to risk it.

We very much surprised the family and enjoyed the much more normal Branson, MO, I didn't have a baby, and I got back in time to not have to confess to my little out-of-state trip when they interrogated me at my next appointment.

Each child was assigned a woodland animal before birth. Madeline was hedgehog.

Another hedgehog. Yes, I bought both these things.

Genevieve inspecting the ultrasound.

Isabelle watching my yoga video.

Isabelle finding alternative uses for my yoga blocks.

My announcement photo.