"Do you ever wonder why (your baby was born so soon)?"

Father and son
Copyright held by the author. Do not reproduce without permission.

Last week Steve and I met a retired pastor. In the course of our conversation, he learned about our son’s ridiculously early birth and subsequent struggles.

“When you think about your son, do you ever wonder, WHY?” he asked.

“For every 'why,' there are twenty-three 'thank you's,” Steve responded.

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My answer would have been, “Yes. I often wrestle with the ‘why.’ Why is he alive? Why can he see and hear and speak?  Why can he walk and talk and play and make jokes? Nearly every day I wonder why.”

I'm grateful my life partner is so much more eloquent (and concise!) than I.

To celebrate Steve’s twenty-three “thank-you”s (I never did hear what they were), here are twenty-three of my own.

1. Thank you for life through the night

2. For the opening of eyes and the ability to see

3. For plastic tubes and life-saving bleeps

4. For doctors and nurses

5. For breast milk

6. For the ability to hold one’s child

7. For the sound of a squeak of a cry

8. For kidneys that work

9. For intestines that digest

10. For therapists that understand and care

11. For laughing and smiles

12. For two staples and a scalpel used to heal a broken heart

13. For family and friends that stay away when sick

14. For family and friends that cleaned and cared and cooked when they were well

15. For PICC and central lines so that pokes are no longer needed

16. For brains and bodies that can get stronger – even if it takes hours of therapy

17. For the groaned prayers and lit candles of friends around the world

18. For the good sense to catch oneself when one falls – thanks for the vestibular system

19. For walking, and the tools that makes it possible

20. For talking, even if mumbled words

21. For peace beyond understanding when things are uncertain, and the comfort provided by sympathetic friends

22. For perseverance

23. For a chance

What are your "why"s and your "thank you"s?

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.
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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

The Runner

If you know me, then you will not be surprised that on an early autumn day a year and a half ago, healing from a c-section scar, I noticed a runner and at first I mourned.

I'm not particularly fit, but I love running. It is a banya for my soul. Each step, each mile has me beating my soles like birch twigs in a sweat house. I am cleansed as toxins housed deep in my heart and head are brought forth and released through tiny pores, flushed down the drain by a refreshing post-run shower. My heart rate regulates, my temper calms, and I can be more the person I wanted to be.

Once I could do it, running became a part of my self-prescribed therapy and a reference point for how far I'd come after being thrust into the life of difficult-to-digest emotions, the life of parenting a severely premature baby.

So look back with me, will you? See a glimpse of the runner that I saw as I drove into the NICU that warm September day. The story has been posted in two parts.
Part one
Part two

In the end the moment reminded me that even when you feel you're treading an unknown and lonely path, often there are footprints of those that went before you, if you take a second glance.

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The full story can be found on differentdream.com. A warm thank you Jolene and the rest of the crew at differentdream.com for wanting to include my story on their blog for parents of special needs children.