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There is a chapel here at Children’s Hospital on your left as you enter the Giraffe entrance.  There you will see a wall of windows facing west with four stained glass panels.  Faux candles flicker in the window sill.  A great tree sculpture fills the opposite wall.  There are chairs and a pulpit for a service.  This is where someone suggested I could come and cry, that it was a nice quiet place.  That was the day I wrote about doing Allistaire’s dressing change and how so much held back, wild sorrow was straining to be released.  I told her that this was not quiet crying I needed to do.  Yet because of her suggestion, I checked out the chapel a few days later.  It was late afternoon and bright yellow sun was breaking in under the low clouds, streaming out from the crack in the cloud in a wide plane of light that lit up the room with sudden honey warmth.  I walked about the room seeing all that it contained.  I was drawn to a little alcove in the wall where two enormous black books lay.  I expected to find a huge Bible.  Instead, I took in one of the most sobering sights I have ever seen.  Even to begin contemplating what I was seeing was daunting beyond words.  I knew that if it felt this weighty just to look through the pages, that I could not begin to truly imagine what each line written actually represented – a life, a beginning and an end.  On each line, in beautiful black script is written the full name of a child with their date of birth, and then, the simple numbers that tell you when the end came.  Your eyes scan the dates and calculate, how old was this child?  Some only a day old, some a month, another 5 years.  You read the name, the carefully selected name, the name that was to be written in a first graders thick pencilled letters, the name that was to appear in embossed letters on a diploma or wedding invitation, a name that would be the first impression on a resume.  On that day the last dates written in the memorial book were several months ago.  Today when I was in the chapel the last life ended but 6 days ago.  She was 8 months old.

When I was in junior high our youth pastor taught us one evening about a word that I will never forget.  He was talking about the verse in Matthew 9, where it says that Jesus saw the crowds and had compassion on them because they were harassed and helpless, like sheep without a shepherd.  The greek word for compassion here is: splagchnizomai; it means to be moved in your bowels.  Our pastor explained the meaning of compassion by describing a situation in which you watch someone slam a hammer down on their finger.  You literally feel their pain, you take in the situation and you double over in the pain that they are experiencing that you now share in; it has become your own pain.  Perhaps this word has stuck in my mind because of it’s crazy spelling or because my finger still throbs from hearing the story.  I think it has stuck so profoundly, not just in my mind, but in my heart, because it showed me a facet of who God that initially seems unnecessary.  Throughout the Bible, God, Jehovah, is described as a savior, a rescuer, a hiding place, one who lifts us up, binds up.  He is pictured as an able God with a mighty arm to save.  It seems to me that the only necessary quality of a savior is that one be able to rescue and bring to safety the one in trouble.  But God was not content to be a savior who is only able to rescue, to lift up from the pit.  God deemed it essential that He be a compassionate savior, one that can identify with our pains, who is familiar with sorrow, who knows the overwhelming grief of death, the sting of betrayal, the brokenness of relationship.  Compassion is a core component of His love for us.  I was reminded of this once again as we were studying Hebrews in Bible Study Fellowship this fall.    In Hebrews 4 it tells of Jesus Christ being one who can empathize with our weaknesses because He was tempted in every way, just as we are.  The sort of love that God has for us, that He defines Himself by, is a love that comes down, that walks alongside us, that feels pain in all it’s many facets as we do.  His love is not a love that is content to stay off and lofty and at a comfortable distance.  He is a God who has come down to us.  He stands before us and at our side wanting to show Himself an able rescuer, not only because He is mighty, but because He knows the load we carry.  He knows how deep is our crevasse, how heavy our burden.  He comes down to us that He might look us in the eye and tell us that He can lift that which is absolutely dragging us down.  He comes to where we are in order demonstrate that He has considered in detail our predicament and confidently asserts that He has a rescue plan that will work, He has the tools and the strength and the willingness to rescue us from death, in all it’s forms, even if it means His own death, because it did mean His own death.

Why do I look at those beautifully written black words?  I want to soak them up; I want to take them into myself.  When I see the bald heads and feeding tubes and IV poles, I want to imagine what it would be like if it were my own child.  I see the twisted, distorted features on the faces in the halls and I know that no medication can mend completely this brokenness.  I imagine what it would be like to have this journey be a lifetime, not just 7 months.  When I talk with the mom whose son was admitted after having posted his suicide letter on Facebook, I want to imagine her fear.  When I pass by the ICU sleeping rooms and I yearn to go in and lay down and close the door, I try to imagine the stories of those who do sleep in those small spaces.  I look at the time expressed by the simple dash, and I wonder about what joys and aches are contained in the wee expanse.  I want to feel the pain that is their pain but has not been my own pain.  Why?  Am I masochistic?  No, I am seeking to love my fellow humans, to love those He has put in my path.  Compassion, feeling the pain of another, is core to God’s love.  After Jesus rose from the dead and ascended into heaven, there is a way in which He left us, even though He will return one day permanently, never to again leave.  He said that in His leaving, He would send His Spirit and in this way He would be/will be present with us.  His Spirit now dwells in me and all who call on Him as Father.  Until Christ’s final return, as one indwellt with the Spirit of God, the mystery, I am the hands, the feet, the seeing eyes, the hearing ears, the tangible expression of the compassionate God who loves us beyond our imagining.  When I seek to grow in empathy, when I strive to imagine the details and I feel the welling of sorrow, I am able to stand closer with those who need their wounds healed, who are heavy laden.  I walk the halls with my new-found friends because I want to be close to the life they are living, to their reality.  I want to hear their stories, to know the joys and aches that eventually will be expressed, so absurd in its simplicity, in a dash between two dates.  I long to love my God by loving the people He created, by being the tangible expression of His love in this place where He can seem so silent, so far away, so oblivious of suffering and heartbreak.  Here I am, I am in this place, I ride the elevator.  I use the kitchenette.  I walk the halls.  And for as many days as the Lord gives me entrance into these doors, I yearn and I strive to grow in compassion, which is to willfully allow in pain, in order to more truly reflect the compassionate heart of God, that He might be seen as an able savior, one that has come down to us to walk with us through our days and to carry the great weight of our brokenness.

Eventually, though, I will leave this hospital and eventually, I may not know the names, much less the stories, of those whose lives fill this place.  I may even forget the names of those who have become dear to me.  The details of their stories will blur and blend.  What I am doubtful I will forget though, is the time Sten and Allistaire, and I have spent here.  What it has felt like to fear death in a very real and present way.  What it is like to have your family scattered.  What it is like to be weary.  I thank God for these pains He has given me for it has enlarged my ability to have compassion.  When I miscarried at 10 weeks and I had to go to the hospital to have the remnants of now dead life removed and when for 9 months after I battled sorrow and fear of whether or not I could have another child, I realized that I had barely touched on an experience that so many women throughout time and history have experienced.  Mine was a slight sorrow in contrast to that of many, but I knew that I had tasted this particular sorrow and that it would mark me.  If I turned sorrow over to the Lord, it had the potential to transform me into someone more lovely, more able to love, more able to hear, more able to see.

I’m including tonight excerpts from a few emails my sweet brother, Patrick, has sent me over the past few months since this all began with Allistaire.  In these he articulates his striving to try to love me in this hard time.  He tries to imagine himself in our shoes so that he may be more suited to love me.  He reflects on the pain in his own life and looks to it to give him a taste of my pain.  He does this because he loves.  In our gut we know, this is the truest sort of love, one that comes in close to where we are, and sometimes the place in which we dwell is a land of terror, of suffering, of sorrow.  Can my brother really know what it feels like?  No, he can’t and that’s okay, he doesn’t need to know completely.  But he knows in part and thus, he is better able to meet me, to search for words of comfort, and sometimes, simply better able to be present with me because he has sought to find me in the place that I am.  He has allowed God to use the pains he has experienced, to be transformed into a more lovely, and “more able to love” man.  You will hear his sadness and dissatisfaction with not being able to love me as he is striving to do.  The thing is, these words from my brother, this striving to imagine our pain as he reflects on the pain that has been part of his own life, well, they are some of the most treasured words I have known in these two months.  They have accomplished far more love than he can know, far more sweetness and comfort than I can express.  What feels like humble, insufficient means can be used mightily by the Lord.

Email from Pat from 12/26:

“I think about you a lot these days.  I call to mind the moments of my life when I feared for my children:  Lucy in the NICU; the call from Lucy’s doctor saying that she had a kidney infection and needed to be admitted right away; the call from Elijah’s doctor saying that he was positive for MCAD.  I remember those times and I try to feel those feelings again so that I can somehow come as close as possible to where you’re at.  But every time I know in my gut that my experiences, real and terrifying as they were, stop far short of where you’re at.  I feel guilty a lot.  I want to have a deep deep compassion – the “been there before” kind.  But I haven’t been there before.  I’m often left wanting to be encouraging but instead find myself silent.  My only accomplishment feels like having avoided the hollow “it’ll be ok” encouragement that’s been offered to me in the past.  I’m sure Mom and Dad would agree: it’s hard to sit on the sidelines.  I want to somehow take it away for you but I can’t.  I want to at least feel it with you, but it seems that I can’t do that either.  I don’t know what to conclude in that regard, but again find myself silent, listening, and waiting.  A really cheesy analogy just came to mind.  I feel like one of the hobbits in the The Lord of the Rings.  I’m not Frodo, the one carrying the ring.  I’m just one of the supporting characters that goes along for the journey.  Only Frodo can carry the ring and only Frodo understands what it feels like; the pain, the responsibility, the dread, the determination to keep going.  Anything I can do to lighten your load just feels inconsequential.

(Since I’ve already broken the rule against invoking Lord of the Rings references, I’ll keep going deeper into my geekdom.  One of my favorite parts of the book is when Frodo says to Gandalf “I wish this had never happened.  I wish the ring had never come to me.”  I love Gandalf’s response, “So do all who live to see such times, but it is not for them to decide.  All you can decide is what you are going to do with the time that is given to you.”  This idea is central in Viktor Frankl’s book too.)

Anyway, I didn’t write to seek sympathy.  I guess I just figured I’d take time to articulate what it’s like on the other side of things.  I’m sure that a lot of what I’m feeling would be echoed by others.  I love you very much.  I look at this situation (and life in general) and I’m blown away by the way that sorrow and blessing and joy are all woven together.   Life is a single cord woven together of many strands, and there’s no untangling them.  I’m sad and joyful at the same time.”

This is his email from 1/13:

“I always feel so inadequate to say anything to you about the situation
with Allistaire.  My mind keeps trying and trying to find connections
back to my experiences with Elijah, but then in my gut I know that
though we’re two floors apart at Children’s, the emotional stress of
our experience doesn’t hold a candle to yours.  Still there are shades
of understanding for which I’m thankful.  I was looking at Elijah’s
face last night as everyone was rushing around to figure out what to
do with his IV.  We held him down on the crib as they poked him over
and over again with the needle; first in his foot, then each of his
hands, then in the forearm, then back to the hands.  Even as a 2 month
old baby, he looked up at me with eyes wide open, bright red face,
screaming until no sound came out.  He seemed to be begging us to
stop.  Once they finally gave up we wrapped him up and held him.  As
time passed I was afraid, but just sat there looking at his calm,
sleeping face.  I couldn’t help but think how strange it is that he
could already be entering a metabolic crisis and we wouldn’t even know
it.  There’s no alarm that goes off when damage to his brain and liver
begins.  There’s no sad music that comes in on cue to let us know that
things are about to get bad.  We’ve watched too many movies I guess.
The real seems unreal in these moments.

Your last blog post was tough for your brother to read.  I’ve glimpsed
just enough in my own experiences to understand not how deep the
sorrow goes, but that it goes much much deeper than you’d ever imagine
it could.  Maybe that’s it…I can’t be where you’re at without living
it, but I can appreciate that it exceeds all expectations in sorrow,
stress, etc.  I remember telling Chris after we had Lucy that being a
parent had substantially expanded my emotional range.  The highs are
higher than anything I’d experienced before and the lows are so
terribly low.  And that’s just with a normal healthy kid.  Add illness
to the mix the range expands even further.  I wish the Elijah didn’t
have MCAD, but I’m thankful for it in that I fear I’d be completely
out of touch with your experiences otherwise.

I noticed the card you have on the wall in Allistaire’s room with the
quote “Everything will be ok in the end.  If it’s not ok, it’s not the
end.”  I got a bit choked up when I saw that.  It’s not a perfect
comfort.  “The end” is a long way off; and “not ok” means a lot more
than it lets on.  But still it was a sweet reassurance that given the
right perspective of time, things will be made right and good, even
our worst suffering.  I don’t know what to tell you other than that I
love you and that I’m confident that God will redeem our sorrows.”

At this point in my life I cannot know what it is like to walk a road in which you experience the death of your child.  I do not know what it is like to carry a child in my womb for 9 months and then only see that wee face for a day or a month.  I do not know what it is like to invest 17 years in someone who grows and grows even more part of you than when they dwelt inside your very flesh.  There are innumerable sorrows with which I am unacquainted.  But I keep asking the Lord to help me accept what He has given me and see it is a gift, as good, as something that will enable me to better love.  How can it not be a good thing to more capable of love, of offering words that bind up, of being a presence that brings comfort?

2 responses »

  1. wow.
    i just read this post & felt like I was transported to a very quiet & deep place (of yours, of your brother’s, of your fellow hospital friends, of mine and assuredly of God’s).
    There’s not a single combination of vowels and consonants with which it seems fitting to ‘post a comment’, so I’m just leaving it here: I am gently hushed by both of your words & I yearn to never be far from a readiness & willingness to enter into someone’s pain (splagchnizomai style)… so as to know them more, but to also know greater depths of God’s mercy.
    Thank you (both) for your aggressively curious, kind, and relentless hearts.

  2. I double what Sam said… Wow. A lot to think about today. God is using you in mighty ways. Sounds like you have a pretty incredible brother.

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