Sleepover at Emma’s (pt. 3)

Family was gathered everywhere, the house was full when I walked back in that night of April 30, 2021.

There was a sense of relief, paralleled to the feeling of sadness in each room.

It was one of life’s greatest conundrums and how do you talk to anyone about a sense of relief.

If you aren’t on Team Emma, you couldn’t possibly understand.

We aren’t monsters, quite the opposite really, but those thoughts of others on the outside were imminent.

No matter what we know or rather trust to be the best path to follow, there would always be someone scrutinizing, and as strong as we like to stand that is never easy to endure especially for Mickayla, Kory and Maddie.

But here we were once again, gathered around our Bemma with sounds of laughter filling the house.

You could still feel, and it was as if you could almost see each persons heavy heart hanging above their heads. 

But that powerful and genuine camaraderie we’ve curated allowed us all to lighten the mood and give this girl a party of a homecoming, just like the good old days of slap happy exhaustion filling her hospital room with laughter between the tears.

We were back, the gang’s all here!

We celebrated her first homecoming, back to her home on this Earth after being in the hospital over thirty days, it was time to celebrate this homecoming-

The one that would allow her to run, talk, sing and dance!

The one that would relieve her of her pain-

Even if it caused an influx in ours, for ours was going to be survivable whether we knew that or not.

Emma deserved that, she deserved us rallying for her, not just loving her but loving each other.

Emma deserved to know and feel surrounded in that we would be OK, it was her gift to us.

Full circle I might add, poor girl revived her nickname of Patches. That should tell you something I would think.

To see how beautiful and full her curly red hair had gotten when she was at her healthiest, yet here we hold a girl who’s health decline has caused most of her hair to fall out and what remained wasn’t any picture of health, frankly even most of the color had simply faded away.

Emma had received her comfort care medicine and we had no idea how this was going to play out.

Would this be a short and quick process, how long would it take? We committed to all of it, every single one of us were in it with her for every last moment.

It isn’t that we were in a hurry for her to go, we never wanted that, NINE years we held out hope.

For NINE YEARS we lived to

GIVE HER THE WORLD

TO HOLD HER HAND

TO BE HER FAMILY FOR AS LONG AS WE COULD

TO LIVE EVERY MOMENT TIL THAT DAY COMES

WE LIVED TO SHOW HER WHAT IT MEANS TO BE LOVED

Unfortunately these happen to be very natural course of thoughts and those ones hard to talk about because all the rational in the world won’t not make you feel a little shameful by thinking them.

We started Saturday May 1, 2021 with anticipation of how this would go. Regardless of the pain we were feeling, there was excitement that her pain would soon feel better, with the medications she could rest.

You don’t understand, she moaned, cried and whimpered in pain the days leading up to this.

It was shattering to hear.

Emma was so hoarse, her whimpers were gravelly, she didn’t have the strength anymore.

We found peace in the term comfort care meaning just that, she was finally going to be comfortable.

That is how it started at first, the first couple doses of medicine we could see relief on her.

Then her first breakthrough pain hit and she wailed.

Every time I think I’ve never seen Mickayla “this” broken, this absolutely crushed, she proves she can push to another level and this was one.

When she realized Emma’s breakthrough pain, I thought shit, we might lose them both through this.

When we realized Emma’s breakthrough pain, it also solidified we were doing the right thing.

The best, WORST, realization.

You don’t know THAT pain unless you were in THAT room at THAT moment. Something only a mother’s love could know.

After speaking to the pediatrician we were told we could add .25 more of the pain medicine-

Morphine

I’m dancing around some of the truths but everyone knows hospice knows it’s morphine.

We weren’t calling it hospice, it was comfort care. So it wasn’t morphine, it was just pain meds.

It’s astonishing that in the relief of pain Emma had, we were crushingly enlightened to the level of pain she was simply enduring the days leading up to this moment.

That her original dosing scheduled to be at 2 hours .5, was quickly adjusted because that wasn’t carrying her through.

Can you fathom?

Being passive about a pain you just don’t know any different, you get a spit of relief from a dose of medicine that doesn’t even carry you 2 hours and when that pain wakes back up your suddenly, and excruciatingly now aware how much it hurts.

I remember a moment of such despair in my friend that had (had) to be so strong for so long. In that moment I took charge of Emma’s medications and schedule.

Phew, that one puts a lump in my throat. I’m going to try and keep driving this train without throwing up.

It might get dark(er) in here, if you didn’t gather, this is your only spoken warning.

All I knew was that my best friends, my BEST family deserved to sit with their baby girl with no worries other than to just enjoy her presence, be in their own family bubble with us around them simply to take care of everything else.

They had shouldered all the work, all the life sustaining medications, procedures for 9 YEARS!

What I knew was, regardless of everything they had to do leading up to this moment -no parents should ever have to administer these medications.

Morphine for pain that would help her sleep peacefully, at some point so much so she’d drift from her body.

Drops in here mouth to keep her from gurgling, aspirating and that death rattle.

Things I knew nothing about even just a day before this moment.

So Saturday, where was I…

Meme was in the papasan with Emma for a good chunk of the morning, they needed that hang out sister time before Emma started getting sleepier. Big Sis definitely got dibs on Little Sis’s remaining lively time.

Because once the doses starting stacking, at that point it would almost be like holding a dead baby, who wasn’t yet.

Oh hell, remember I said a house full of family committed to seeing her through her celebration of relief-

Yah, about that so Mama Sealey… DUBBA D  (Mickayla’s mom) showed up with her damn RV and parked it in the yard!

When we commit, we commit folks. Hahahaha

And Haley showed up, having driven hooooours from Alabama ( I think it was Alabama at the time, nevertheless it was a long damn way ).  

It’s moments like that where the reality cements itself and you breakdown a little, then pack it back in and keep forging forward.

Emma was SO Loved, Cherished and Wanted always, there is no question in that.

If you couldn’t see that with how we surrounded her in all the good times and bad, let me just throw some fire in your eyes you don’t need them apparently.

Emma’s medicine does was so minute, that initial few doses were given under the tongue as the doctor advised was fine. Seriously barely a spit of liquid was this dose.

But that Saturday evening after a dose of morphine under the tongue, family in the family room and a few of us in the kitchen siting at the table.

We hear a little change in conversational tone and I shit you not, in from the family walks Miss Nonie through the kitchen like some Town Crier -

She’s gone, it’s over she’s gone.

Deadpan.

Just as simple as saying hey gang the food’s here! Hahahahaha

Listen, we aren’t your garden variety on the store shelves -we’re the misfit fruits with bruises most can’t process.

Then suddenly, she gasped, little turd!

She was still not giving up.

Honestly we all breathed a sigh of relief, that Meme wasn’t the one holding her anymore. I think that hit us the hardest at how close that was to happening.

From that point on only the atropine was give sublingual and all morphine, lorazepam and zofran were given through her g-tube…

(the same one that acted as a pregnancy test for me just 9 years prior almost to the same week even, by making not queasy Aunt Sami instantly throw up with Mickayla running out of Emma’s PICU room after me yelling to the masses you better not be pregnant! Ha! Good times!)

Here we go, into the overnight hours medicating every 2 hours. I’d created a system by this point of medication management so that we were organized, we were on top of it, we were going to keep her comfortable.

But that whole night, every 2 hours I had to walk to her door, to open that door and wonder, was she going to be alive when I went to her.

Every time.

I would try to nap in between and fear would startle me awake constantly, greater than any fear felt in those thirty days at the beginning of Emma’s life.

I’d walk to that door and my heart would pause, a lump would grow in my throat, an elephant would kick me in the stomach.

I’d slowly crack open the door and just pause again, waiting to see sign of life..

Or sign of death.

Every time. Every 2 hours. Was I even hoping for one way over the other? I didn’t even know. I was just there, a job needed done, care needed given.

With every dose my mind would wander more, the thoughts while watching her physical start to change, her soul, her SPARK start to dissipate

Was I killing this little girl, was I taking the life of my best friends daughter, Meme’s sister, my niece and the greatest damn teacher of LIFE I’d ever known?

I don’t know how you exist in moments like these, without the mind throwing dark thoughts like darks to a board.

Mickayla and I were talking this morning about being callous, the obvious is that to some that may appear to be the only truth.

But what I know is, you can’t be callous and approach the insurmountable task of providing this kind of care to another human life. That my friends is all compassion.

Compassion stopped me every 2 hours at that doorway, the entrance to her bedroom where she lay either breathing still, or not.

Compassion helped me navigate the dark thoughts, knowing we were giving her the greatest gift, as was she - OUR greatest gift!

Callous?!  Everything but friends, everything but.

To be continued…

Take good care and travel safe,

Sami

Images from here out will be small moments in remembering her in life, once she was transitioning out of the home in her body, no more pictures were taken. <3