Duplicated from our CaringBridge site for permanent record here.
January 5, 2021, written by Mama
Today, after 14 days of quarantining, I got to go home. There has been a painful backstory to the fourteen days of Chris staying home and my staying here after what did not qualify as a known COVID exposure per the CDC, and it turned out not to be voluntary, but I will keep the details of our challenges off of the public domain.
Thomas had a day of good progress.
The Respiratory Therapist removed Thomas's supplemental oxygen and he is holding his own beautifully. Below, Thomas smiling without anything on his face.
Weaning sedation continued, with Precedex down from 0.9 to 0.8 and Ativan down from 1.2 to 1.0.
He resumed Physical Therapy yet again (he has started and stopped several times), doing well in a lengthy session. By 'doing well,' I mean that it took the therapist about 45 minutes of gentle, persistent movements to get Thomas to un-contract his four limbs.
Daddy enjoyed seven whole hours with his beloved boy today! He made some videos:
Thomas saying "Jesus" while he holds his little crucifix:
Thomas identifying all his siblings (and himself) by name from a photograph:
Our sweet boy continues to experience delirium. Chris filmed his grief-filled reaction to seeing a photograph of me:
Heartbreakingly, sometimes Thomas is crying about Mama to me! He will say he doesn't know who I am, but "I need Mama! I need Mama!" Then he tries to get out of the bed and tells me, "I'm stuck!" repeatedly. He also tells me that he is scared and he wants to go home. Sometimes he outright tells me that he does not know who I am. Most of the time, he is enjoying my presence, but doesn't necessarily know me other than a loving, comfortable lady. And sometimes he has been able to tell me that he knows that I am Mama.
I went home mid-afternoon bearing a fun balloon for David and a chocolately popcorn treat for the whole gang. David greeted me naked-bottom because he is potty training and spun around gleefully with his balloon.
The PICU staff tries so hard to take care of my bodily needs and make me comfortable, but I had forgotten what a taste of luxury felt like after nearly two months.
While dinner was cooking, the children then gathered to give me a concert of a song they have been working on for nearly two weeks. The lyrics are about a man who returns to the town he loved after the Irish Troubles. I had a tear trickling down my cheek during the performance, but afterward, I was simply overcome with racking sobs. It felt like an eternity as I wept uncontrollably, telling the children that what I've been doing every day for Thomas is so hard, harder than anything I've ever done, and I miss our family greatly. They dogpiled on me with hugs and kisses and they really got to see that I am not made of stone.
"Town I Loved So Well"
Author: Phil Coulter
Source: https://www.irishsongs.com/lyrics.php?Action=view&Song_id=359
In my memory I will always see the town that I have loved so well
Where our school played ball by the gas yard wall
And we laughed through the smoke and the smell.
Going home in the rain running up the dark lane
Past the jail and down beside the Fountain
Those were happy days in so many many ways
In the town I loved so well.
In the early morn the shirt factory horn
Called the women from Creggan, the Moor and the Bog
While the men on the dole played a mother's role
Fed the children and then walked the dog
And when times got rough there was just about enough
But they saw it through without complaining
For deep inside was a burning pride
In the town I loved so well.
There was music there in the Derry air
Like a language that we could all understand
I remember the day when I earned my first pay
When I played in a small pick-up band
There I spent my youth and to tell you the truth
I was sad to leave it all behind me
There I learned about life and I found a wife
In the town I loved so well:
But when I returned oh my eyes how they burned
To see how a town could be brought to its knees
By the armoured cars and the bombed out bars
And the gas that hangs on to every breeze
Now the army's installed by the old gasyard wall
And the [old] barbed wire gets higher and higher
With their tanks and their guns
Oh my [dear], what have they done
To the town I loved so well.
Now the music's gone but they carry on
For their spirit's been bruised, never broken
They will not forget but their hearts are set
On tomorrow and peace once again
Now what's done is done and what's won is won
And what's lost is lost and gone forever
I can only pray for a bright brand new day
For the town I love so well.
After dinner, I had the children open Epiphany gifts from us parents. While I hope to visit them tomorrow on the feast of the Epiphany, I can make no promises these days about anything and I wanted to experience their joy at this basket of books. They were delighted and, just like on Christmas, variously scattered and silently read their new acquisitions.
Speaking of gifts, while I was straightening up in the den, I found a stash of Christmas gifts . . . for me! It occurred to me that I never opened my own Christmas gifts and, indeed, it had not occurred to me that I had received any. So, if I haven't thanked any of you, it's because I haven't even opened the gifts yet--ha! I will try to open them when I go home next time. Thank you, thoughtful friends and family.
Beautiful performance by your children! But it's NOT about WWII, it's about "the troubles" in Northern Ireland - you can get information about it easily (and even teach your children about the history of this country).
ReplyDeleteI'm praying for you and your children every day - especially for poor Thomas. So glad he doesn't need dialysis and got his perma cath removed. Delirium is a bad thing, but he'll get over it and in his little but strong heart, he KNOWS who his mama is!!!
Thank you for the additional information! I had been told it was about World War II and I certainly don't have time to think about details except Thomas's myriad details these days! I edited the blog post to correct it.
Delete