This was the view from Zoe's room when she was at Children's.
Talked to a visitor of this blog and a dear friend this weekend and she assured me it was ok to acknowledge that this situation really sucks.
It hits us at odd times, times that in retrospect, were obvious - but they snuck up on us. Like when Jen saw the kids singing in church today. Because that was going to be Zoe, and Zoe was going to be the best voice of them all. Better than anyone you know. That's about 1/8 proud parenting and 7/8 pretty good guessing.
Mine was watching little Nora Bromley belt out "Tomorrow" during "Annie" that we attended today. I was frozen. I couldn't look at her. She was awesome. She was incredible. And Zoe was going to be better.
And I'm not jealous of my dear friends the Bromleys. I know Jen isn't of any of those little lambs in church today. It's just that we were breathing air that wasn't in the room, air we were never meant to breathe. And it's suffocating.
28"Come to me, all you who are weary and burdened, and I will give you rest. 29Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30For my yoke is easy and my burden is light."
To me, these burdened people Jesus is talking about are people breathing air they shouldn't be. It's air filled with guilt they shouldn't be feeling, futures they don't hold, pasts they can't change. It's caustic air, poisonous. Painful.
The truth is: right now is ok. Right now, Zoe is sleeping over there, dutifully breathing the air she's supposed to. Zoe did not get a memo on expected life span (median age for Trisomy 18 is 8 days), and it turns out there's a whole lot of grit in her. We took out her unused eating tube (I just got done feeding her 45 units 1.5 hours after feeding her 40 units) (the doctors want her to eat 38 units every three hours). Our friend told me to tell her to "Fight like Hell." I'll tell her to fight like Heaven. They win, anyway.
It's her parents that struggle. Right now, we have been given exactly enough grace and oxygen to live through this moment. We have an incredible network of support around us right now. His yoke is indeed easy.
The word "easy" is interesting to me. The original Greek word used is χρηστός - which has an array of meanings. Fit for use; good; pleasant; mild. And right now, this moment is fit for use, good, mild - I'll have to table "pleasant."
I want more. Out of all the things I want - watching her take her first steps, listening to her tell me she can't sleep in her bed, watching her dance with the boys to Alvin and the Chipmunks, reading "Go Dog Go", kissing her goodbye on Prom night - and the one that I was or am certain was going to happen - Zoe singing lead in everything - I'm not going to get any of those. I am not going to get what I want. It's suffocating. I pulled Aidan onto my lap during the play so I could hide behind him and cry. Jen tried to take a bath tonight to relax but angrily got out. She couldn't relax. No air.
So keep praying, dear readers. I don't know where this goes. If your energy is flagging, if your interest is waning, believe me, our energy is just as tapped. These are glorious days of wonder, living in the awe of another day of life. We just have to learn to breathe the same air Zoe is.
(i went through the blog and have added a link to every song i mention so you can buy and download if you want the true experience)
Breathing Air Again
By Robbie Seay Band
Take the time to start anew
Maybe it's in front of you
Take the time to walk down your street
And heaven knows who you might meet
Take the time to be okay
And laugh a bit along the way
You could take me for a ride, we could just drive all day
And we could breathe again
Step outside our front door
And gaze upon the stars
And know we're not alone
So run into the fields
Scream louder than you can
It's good to be alive
And breathing air again
Take the time to stop and stare
Heaven's beauty everywhere
Take the time to think about
Someone else besides yourself
Take the time to be okay
And laugh a bit along the way
You could take me for a ride
We could just drive all day
Ah, but here is where you are wrong, my friend. Zoe WILL sing. Her first performance? Heaven. Her first audience? The KING. Her first applause? HIS, and any attending angels, of course!
ReplyDeleteCan any of US match that?
It IS okay to feel the pain of the situation. As Christians, it is not our duty or calling to mask our emotions, hide our difficulties or wear paper masks. If we are "real people", we live in the here and now, showing others that we are just like them, but that we also have HOPE.
James 1:12 "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."
So breathe my dear brother and sister. Breathe and cry and rejoice and hope. Then breathe again. And we breathe with you.