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.