Surviving your child's long hospital stay - Part 1: admit you're worn

I recently read where someone asked how others survived being long-term NICU parents. Five months in the NICU, or any hospital, is too long. We got out sooner than we'd expected, but it was a difficult road.

I remember I was too emotionally exhausted to cry. The bones of my soul were brittle and all my nerves had been exposed so long that they were now raw, not emotionless, but too burned to feel any sensation. And I wasn't the one hooked up to the monitor.

A friend posted this song (below) on my facebook page two months in. I didn't really listen to it for long then, because I didn't want to hear anything that hurt, I wanted the raw nerves to remain numbed. But when I did listen to it, it hit home -- harder than I thought it would.

I know the writer sings of depression, anxiety, and unseen areas of being worn -- but that's not what I heard when I finally clicked the link. Every line seemed to apply either to me or to my son, and often both. I often sang the words metaphorically or spiritually for myself, and sang parallel words for our son. The difference was, when I thought of our son, the words were applied a eerily literal way. His physical body was torn. We were worn.  And somehow admitting it helped.  Here are the words, and here is what my mind saw as I heard them.
------------------------------------------------------------

Keep on breathing, heart heavy
takes too much work. Intubate me.

Worn
(Tenth Avenue North)

I'm tired
I'm worn
My heart is heavy
From the work it takes to keep on breathing

Just before heart surgery. For him the
"frail torn" heart was a literal thing.

I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left

(Chorus) Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

Getting blood just before his second surgery.
"All that's dead inside" for J was his gut. He need it to live, but
it had died off (NEC). Chances of survival slipped to slimmer.
"I know I need to lift my eyes up" but his eyes were swollen shut
from over a pound of water weight (edema) on a two pound frame.
At this point it seemed that life would just not give up.
And it occurred to me that rest might not come in life.
He seemed to have "lost his will to fight"
I told him it would get better, that life could be better than this.
I begged him to hold on. All those around me prayed, because I was
too tired to pray anything beyond a moan.

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

(chorus)

Come and flood my eyes
With the most aggressive form
of ROP, we weren't sure he'd see.
But at this point, we finally had hope -
because it looked like he'd healed enough
and he might just live.

And my prayers are wearing thin
I'm worn even before the day begins
I'm worn
I've lost my will to fight
I'm worn
so heaven come and flood my eyes



Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn



I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn.
Yes all that's dead inside will be reborn
Though I'm worn
Yeah I'm worn

Second child's story for her younger brother.

My daughter was writing a story about her brother. It started out pretty normal.
I could tell by the words she was asking me to spell that the story went something like this:

My brother is cute.
He is small.
He is a baby.
He has friends.

Then: "Mom, how do you spell orthotics?"

...

I started laughing out loud, picturing her mentioning all his inanimate "friends."
Orthotics, balls, glasses, bowls (because they sound like "ball" and look like half a ball), cups and cars.

Yes, this is my little  boy.

Toys & Games for CP / PVL kids

It's getting close to Christmas, so let's talk toys. I can't speak for all two year old boys, nor can I speak for all special needs children, but maybe some of my ideas for my child will give you ideas for the kids in your life.

Jonathan has periventricular leukomalacia.  Which on the surface seems to mean he has a mouthful of impressing sounding words and another acronym (PVL) in his medical charts. I explain PVL (in his context only -- not an appropriate explanation for all kids) here. But my one sentence explanation (which, of course, is not at all medically accurate, but gets us close enough for dinner conversation) is that PVL is "a close cousin to cerebral palsy."

Whether from PVL or prematurity, he has a weak core. He has difficulty drawing because he doesn't push down hard enough. We've discovered that a magna doodle is A MUST HAVE. He loves it, because without exerting much force, he still can draw lines.

In addition, he has difficulty letting go of things gently, which makes it difficult to stack things. He's a fantastic kid, but he's weak and clumsy.

So I was DELIGHTED to find this website. (https://www.fatbraintoys.com/special_needs/cerebral_palsy.cfm) I especially covet the Brio Magnetic Building Blocks. I wish Santa hadn't already finished his Christmas shopping for our family.

Another accidental find was "the duck." You see a picture of the duck below. We got J the duck because he hates baths. And we thought if he felt more secure in a bath, he'd like baths better. So far it hasn't worked. BUT -- as long as the duck is not filled with water -- he LOVES the duck. The PT and OT that come to our house love the duck too. J reaches to the side to pick up toys and put them in the duck. He climbs in and out of the duck. In other words, he engages his weak core all over the place.  We found this in the baby bath section of our local grocery store.

In other news, you'll notice in the first picture that J's walker sits under the Christmas tree, "a crutch... carefully preserved" as he has learned to (mostly) walk around the living room without the walker. He still walks better with AFOs, but he'll walk around without the orthotics now as well.  Merry Christmas, and "God bless us, every one." (for my obsession with Tiny Tim, see this article where a doctor convincingly puts forth the case that Tiny Tim, like Little Jon(athan), had renal tubular acidosis.)

P.S. The duck that he holds in his hand? That is the same duck that you see in his pictures from his 12th day of life, below. See how much he's grown?