This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience.

CaringBridge post from June 11 (see this morning’s post for the blog I wrote the same day). I heard from someone after writing that the song in this post was written by Steven Tyler about his daughter Liv. A quick perusal of Wikipedia says otherwise, that the song wasn’t even written by him. Oh well, I don’t care. It was meaningful to us at the time, and there are several “love songs” that have become favorites of mine that were actually written by parents for their kids. My current favorite is Adele’s “Sweetest Devotion.”

After yesterday, the doctor gave orders for Samantha to have her comfort meds around the clock (instead of as needed). So now we are giving her morphine and her secretion medicine every four hours. It seems to be helping. She’s been pretty sleepy today and only fussy a couple of times. This evening her secretions have gotten somewhat worse so we’ll be suctioning her more tonight I’m sure. But overall she’s had a good day.

So because today was a fairly good day, we actually got out for a bit with her. The on-call nurse stopped by around noon to check on her (per the request of our regular nurse) and then we went to lunch with our extended family and then to the furniture store. My parents are in the process of moving down here and needed a new couch so they had gone shopping earlier and wanted to show us what they picked out. It was a nice little outing and good to feel normal for a little while.

Tomorrow we will take her to church again, and then we are planning to go to our community’s clubhouse for brunch. It’s something we did a lot when I was pregnant and we haven’t eaten there since Samantha was born, so we really want to go with her.

One of the difficult things for me lately has been thinking about how to communicate this situation to certain folks we only have a passing relationship with (or even total strangers). Today someone commented on how cute and little Samantha is. We thanked her, but I was glad she didn’t notice the feeding tube (Sammy was being held and her face was turned away). I’m sure she might have asked about it. And the Schwann’s driver stopped by this week, who knew about the pregnancy and even heard Samantha crying once when he stopped by (before she got sick). How do you tell someone like that that your baby is dying/has died? I think I’m going to wrap some black ribbon around one of the posts of our carport when she does go, as a signal to neighbors and delivery people, but I dread the conversations. Anyone want to volunteer to talk to every single person I’ve ever met for me?

Speaking of volunteers, I want to thank those of you who said you would stay with Samantha at night to give us some extra sleep. We’ve decided to pass on the extra help, though we welcome and encourage any/all of you to come visit and just hold her for awhile whenever it’s convenient for you. With the number of medications she takes and now with her feedings being all through the tube, it’s easier for us to do it than to teaching someone else to. We have our system down. And to be honest, I don’t want to miss a minute of time spent with her, middle of the night or otherwise. I keep thinking of an Aerosmith song, of all things. It’s technically a love song, but it’s so true for what we’re dealing with right now:

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you’re far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Every moment spent with you
Is a moment I treasure

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

Laying close to you
Feeling your heart beating
And I’m wondering what you’re dreaming
Wondering if it’s me you’re seeing
Then I kiss your eyes and thank God we’re together
I just wanna stay with you
In this moment forever, forever and ever

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

I don’t wanna miss one smile
I don’t wanna miss one kiss
I just wanna be with you
Right here with you, just like this
I just wanna hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream would never do
‘Cause I’d still miss you, baby
And I don’t wanna miss a thing

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

Don’t wanna close my eyes
Don’t wanna fall asleep, yeah
I don’t wanna miss a thing

Next post coming tomorrow.

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