Saturday, September 28, 2013

Mourning, reflecting, & lessons learned through JAM.

A year ago I gave a talk in chapel at my college. My college has a campus-wide bible study each year, and this year's study was on the beatitudes. Steve and I planned to lead a bible study in our home, as we do every year, and so over the summer I re-read the beatitudes while on bed rest.

There was a piece that stuck out to me.
"Blessed are those who mourn, for they will be comforted."

While on bed rest, I heard too much of "God won't give you more than you can handle" (actually, ahem, it's God won't TEMPT you more than you can handle."  See?)

Notice I didn't say I heard a lot of these statements, they didn't come at me too often (a testimony to how fantastic my friends are), but I heard them enough.  I even heard it on the radio on my way into the NICU in August, through this song.

And you know what I screamed silently at the radio (actually, okay, I might have screamed this out loud) when I heard this song? -- "Guess what?!  I think He gave us more than we can take!  THIS IS TOUGH."

And you know what else? Jonathan was on the brink of breaking. So the promise that we wouldn't break? It didn't fit. And that's why, instead of clinging to the song or misquoted scripture, I clung to two truths. God was with us (that part of the song is spot-on, see here and here) and it WAS okay to mourn. In fact, when I allowed myself to give up and said "God, I can't do this any more, this child is yours" -- when I truly crumbled in front of my King, THAT is when I felt closest to God, carried by him.  (For more on this theme, see a piece written just this month by Michael Hidalgo called, "Yes, God Will Give You More Than You Can Handle." It is probably more worth reading than this blog, frankly.)

So I approached the chaplain and said I wanted to say a few words when it came time to talk about blessed are those who mourn in chapel. This was in August, over a month before I would actually speak. Jonathan was still alive, but I didn't know if he'd live. In fact, a year ago today, we still weren't sure -- although we were starting to believe we could breathe a bit.

Here are a few snippets of the chapel talk.

I come from an American subculture where, if we were to write the beatitudes, we would have written "Blessed are those who buck up and bear it, for they will see that this too shall pass." [Here I give a brief bit of his story] 
There would be times... when I would not know if things would be okay for [my son]. I had faith in God, and I knew His will would be done, but as I looked at my son, struggling to live, I could not have told you what His will would be. I could only pray. And scream. And hope. And pray some more.
Blessed are those who mourn, for they will be comforted.
This summer, I let myself learn to mourn. 
The odds of long term life and health were against [Jonathan]... Over and over again, I continued to cry, "your will be done." And my cries were not cries of me carrying forth with strength and faith. I had no strength. And my "your will be done," at times would barely come out of my throat, because I was afraid of what his will might be.So I wept. It was foolish to try to stay strong in front of God. He knew my heart. I told him how afraid I was for our son.
I mourned for many things with Jonathan over the summer, and it was in my mourning that, strangely enough, I was comforted.
The comfort came from two places. The first, and strongest, was God's peace and presence. His spirit infused the situation. He didn't tell me what would happen, I didn't know how it would all turn out, and I still don't, but I knew that he was there. That he knew me, that he knew our baby Jonathan, that he loved us all, and that he cared.
The second place that we found comfort was from people: family, friends, and even strangers across the globe... Most days I didn't have the strength to pray, I didn't have the words to know how to pray, but I could see and feel God working. I was being carried by those prayers. [And so was Jonathan.]  ...   [Then I briefly tell this story, and this story.]
When we didn't have the strength, we learned to surrender. When we surrendered, when I learned to give up my outward appearance of having it all together, and when I learned to weep, there was comfort. We found those who could mourn with us. We found ourselves being carried by God, even as he carried our son.
If you think you have to buck up and bear it, if you think you have to stay strong and carry on when things get tough, you're missing something.  Giving it over is harder, but it is better.  Blessed are those who mourn, for they will be comforted.
And if you know someone who is mourning, mourn with them. Join in the cries out to God. It may not always be comfortable, but it is good.
Thank you to all who mourned with us, prayed for us, hoped with us, and ultimately helped carry us through the last two and a half months. The road ahead is long, but in our weakness, in our mourning, we find strength and comfort.


A few things strike me looking back at this. First, it seems like so much of this is about our mourning, our pain -- and not Jonathan's. That seems strange. His pain was there too, and it was what was causing our pain. He, too, was being carried by God, and we saw that over and over again.  I think this betrays something about my mindset. For two months we had seen him so close to death's door. A year ago, I think I still saw him as near death's door. The mourning was still so much about the mourning of the loss of our son, and the needle pokes and incisions and morphine -- those were not what caused him (and us) pain, those are the things that gave us hope. Now, looking back, we are saddened by all he has to go through, but at the time we were stuck in a weird in-between. We were trying hard to celebrate every moment, to celebrate the life he had, while also realizing that that life may not last long.  I'd had to tell his oldest sister he might die. (Again, I am so grateful for her strength in all this.) I think I still felt like an extension of him. Like he and me were still connected, still together fighting for that third trimester. Still waiting to see what kind of baby we had in two more months, when his due date finally came. What a strange spot to be in.

The second is how important corporate prayer was, corporate mourning. This still carries with me. But even after last year I am not as good at it as I wish.

Sometimes I am struck, though. A few days ago I was sobbing like an idiot, curled in a fetal position on the floor with the sort of cries that don't come out smoothly, but in fits and jerks, mostly in barely audible grunts.

I had read the care page update of an old classmate I barely remembered. A mutual friend had referred me to the page because she knew of Jonathan's story. His child is sick like Jonathan was sick. She thought I could give some help or understanding. Instead, I just gave tears. I doubt they will ever know.  I doubled over and I mourned with them.

I really really wished I could say something. Something like, "hey, Jonathan made it, everything's going to be okay."

The truth is, it doesn't work like that. Plus, I got that kind of statement when Jonathan was in the hospital, and it didn't help. Over and over again last year, I'd hear about preemie success stories, but I didn't know that that meant my son would survive. Inevitably their stories were just enough different -- a baby born at 28 weeks, a full month later than Jonathan -- or a baby born larger or stronger -- enough different that I didn't know what all this would mean for MY child. I would feel even more lost and alone when people tried to give hope.

It makes me wonder sometimes. Why do I blog? I mean, can I give hope? I doubt it. I can't really use this as proof to another parent that things will be okayfor their child. In fact, I would NOT recommend this blog to a current NICU parent. It's too raw to read someone else's story.

I think that while I blog for me, as a release for postpartum anxiety and PTSD, I also blog for friends of NICU families.

 I know I wouldn't have known how to walk with someone like Jonathan or like us before we'd been through it ourself. I still feel like a bumbling idiot when I meet a parent with a very sick child, and I've been there, I should have some sense of what to say.

I think I learned from last year that it's less about what you say, and more about how you walk. Are you walking slowly with them, treading the hard road?  Are you asking them to tell you a bit, so that you can help carry their load?  In the end, I think that's why we're so blessed when we mourn. When we start to tear up, we realize that God is there beside us.

Jonathan's like me now. He doesn't like to cry out. He is fourteen months old. He won't call out for us to get him out of bed in the morning. We have to have the monitor on an ultra-sensitive volume so that we can hear him stirring. Otherwise he'll sit there for fifteen minutes. When we come in, be it right away or fifteen minutes later, if we ask him how he's doing, he'll stop staring at his hand (his favorite past time when he is uncomfortable) stare up at us, and his face will melt into tears. "I'm hungry mom."  And I look back at him, "Babe, I've got food for you." I say, "I have been right here all along. You should have told me sooner. I WANT to hear you."

I remember that God wants to hear from us too. And tonight those prayers go to an old classmate I barely remember and his family of5.

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