Sleepover at Emma’s (pt.2)

Apr 27

Our overnight was like a flood of memories from those long overnights at the hospital, but it felt different. This time we had a night nurse dedicated to Emma in her own home and I wasn’t needed to stay up for night watch.

I dozed off and on lightly, still listening.

Her poor bottom was so raw and Nurse Jen was doing everything she could by letting her get some fresh air to it through the night.

When I got up in the morning, April 29, 2021, I found my friend sleeping in her bed just flat exhausted, an image of life I’ll always remember with pillows tucked all around her.

I was going to go lay with her but-

Sweet little sounds were coming from Emma’s room so I went to hang with her while mommy caught up on any little bit of sleep she could. Still not registering she’d need all that to carry through for the next several days.

Emma and I laid there chatting, she just looked at me with such a tired soul. What Emma couldn’t verbalize with words, she spoke loud and clear heart to heart with her eyes. An image, a feeling I will never forget.

I remember saying are you tired and she groaned an “uh huh”.

But in that moment it was still, I guess to say, superficial.

I knew she was tired but I wasn’t getting it (denial), I wasn’t getting what tired we were talking about. When I looked back through pictures I took of her that morning, I saw it all differently…. later.

I saw her face, I saw her eyes and I heard her say Aunt Sami, I’m tired, I’m glad you’re here to help, I’m ready.

But it wasn’t until after that it registered loud and clear, I have a lot of moments I look back on and see it can be hard to really let the message land anywhere.

It was a beautiful day out, we were going to have a girls day in, catch up hang out, check in with each other. Emma was in her papasan chair, as I took a picture of her I saw the beauty of a rainbow above her.

It was magical, maybe some reality started to sink in, but naaaaah.

Emma was in pain, it was undeniable to the degree she was no longer in that quality of life we always talked about, in the early days.

Quality over quantity -

It was the only way to make decisions back then, but now, now those words rang entirely different. Now, the decisions still needed to match that initial belief set for Emma’s life.

In the beginning, that first hospital stay, Mickayla and I would leave the room for the hard talks, the ones people look at you funny for or judge. I got to be that person, she needed a person that when the real gets real, can hear the gamut of thoughts pouring out of a devastated mothers heart.

On this day, I knew that was needed of me to remind her that we talk about it all, safely together. I’ll pump you full of positivity when it is warranted, but I’m not going to be that friend pushing positivity when reality is staring you right in the face.

Here my best friend sat peering at her baby girl, and I remembered that much younger version of them both in a different setting but still the same.

We talked about her feelings, the struggle wondering how to know when is it time, but what I heard was more struggles than not, were about other people and their feelings or thoughts. Not about Mickayla’s compass, not about Emma.

This is where my hard ass comes in I guess.

You have family not ready (no one is), friends cheerfully supporting saying it’s going to be ok (not meant in the way that was evident).

We can’t pretend anymore folks, look at this with real lenses, all of our hearts are going to color this rosy and find stories to tell of how she always rallies.

Look at her like a stranger, LOOK at EMMA who is a 9 year old little girl and tell me she isn’t painfully wasting away and hanging on for us, tell me that her quality of life isn’t shot, tell ME that YOU’RE not ready and I will tell YOU about HER.

Guess what, Mickayla wasn’t ready either but here she sat releasing the burden of her heart and I knew then she was still fighting the same fight.

What I heard was a Mommy advocating for that QUALITY over quantity, something she was always steadfast in from the beginning.

But I heard her treading lightly on behalf of everyone who wasn’t ready, for worries she’d be judged, worries others would resent if she were to appear making that choice.

It would be a choice, Emma was on daily life saving measures from 6 weeks of age.

In my opinion at the time, it was a choice even the doctor wasn’t making. It wouldn’t have been the first time I threatened a medical professional over Emma and I was prepared to have a professional yet stern discussion if asked of me. It was an offer on the table, but not a second before it wasn’t mine to intervene unless asked.

I had to be comfortable in those hard words, remind her all of the other talks, and remind her I was there to stand with her in and through anything she needed. In that moment I had to be comfortable with the fact I might feel a responsibility in when she is gone someday, by being the one to have the hard talks.

It’s delicate, you hold space, you listen and let them come to their own action steps- it isn’t talk to plant ideas or to convince. JUST to hold space for them to safely figure it out without worry of others thoughts, authentic answers. They are in all of us, we only need room to listen.

Turns out, it was like everyone was putting on a brave face for Mickayla, and Mickayla was putting on a brave face for everyone. That happens to work itself out later.

No one wants to be the person who says, yes, it’s time we need to let her rest now. And trust me, I couldn’t say it.

Mickayla had several phone calls and message exchanges with her pediatrician, who was not ready to (give up).

She gave other meds to help, primarily trying to get relief for that sore bottom of hers, I knew they said she was having skin breakdown but you just can’t prepare yourself to see something like that either.

But on with our day we went, girl time, snacks and Grey’s Anatomy.

When I got my camera out to take some pictures of her in her chair, document her life, all of it I could, that is what I did. Emma put her hand on her face, face palmed me just like she always have. I was getting a shot of those lashes which was always so annoying, gosh Aunt Sami! See she was still there. Or rather, she gifted me that visit, that day.

We got her settled on my lap, I broke my joints sitting crisscross applesauce to keep her bottom elevated in a void of space to minimize that irritation -that excruciating pain she was in. Mine was worth every minute to relieve hers.

It was such an amazing day. We had a great visit. Maybe this was all I was needed for, just a little extra armor by way of strengthening hugs and talking about the dark things.

I was just going to go to the farm that night, get a good restful sleep and drive back home to Tennessee Friday. We weren’t there yet. It felt close but not immediate close.

I got up that next day Friday April 30th, better rested and checked in with Mickayla. Miss Nonie was with Emma, going to give her a special bath to help her bottom and Mickayla and Maddie had made it out to run some errands for the first time in days.

Well I hopped into Jacksonville to spend some time with Nana while I was there. Turned out they were having a derby day where she lives and I got invited to stay and play which kept me in town much later than I had anticipated. It was such a good time and Josh had the homestead taken care of so let the fun ride. Nana and I won several derby dollars and she was able to buy some snacks off a cart.

Bags had been all packed and in the car but it was looking more and more like I’d be staying another night at the farm.

Then, I showed up to the visitation service for Andrew’s friend and asked he and Jessica to have Leo’s pizza with me. Figured I would go back to the farm for another good night sleep to head home Saturday instead.

It felt like everything I anticipated for the day was dragging on and my plans kept changing, they were fun and good but I didn’t realize why, until I did.

We were eating at Leo’s, sitting in the outdoors section, just beginning to eat pizza

My phone rang

It was Mickayla

Me: Hey you!

Kayla: Now I know you’ve probably just gotten home-

Me: (interrupting) No, actually, I’m still here and in Jacksonville what do you need?

Kayla: Well I’ve talked to people today, and they’ve listened, I made them listen we’re going to start comfort care…

Me: Ok what do you need? Do you want me to stay at the farm longer? I was just going to stay another night there anyway I can go there and still be close. Do you need anything? I can be there whatever you need.

Kayla: Can you come back?

Me: As soon as I finish eating I’m on my way.

I couldn’t eat. I was stunned but immediately started shifting into prepared mode.

Whatever they needed, just like the beginning. I sat bedside through the nights so my friends could sleep. We started this journey together, we can do this together.

And I just realized this was actually the night I told my mom about the song lyrics, it was this drive over the bridge, around the bends, up the hills and passed the water tower. It will still be important, trust me.

Fall on me

With open arms

Fall on me

From where you are

Fall on me

With all your light

It’s easy to get my days mixed up during this week and I’ve tried not to actively think on it too much. (Stubborn healer). I could fix the first blog but I have to let this naturally purge out. Maybe there is a reason it’s being brought up multiple times.

This was the drive I had to show up on point, and actually KNEW it.

I walked into the kitchen this time, it was Maddie that met me. That embrace was a little harder to swallow.

To be continued…

Take good care and travel safe,

Sami