We returned from a wonderful week in Colorado with some dear friends who sent us tickets so we could visit - they wanted to see us, and also didn't want me to be alone on my birthday. It is astonishing to know that we have such dear friends who care for us, who grieve with us, and who we can also have fun with. We went to hot springs, and up to Rocky Mountain National Park - where we saw snow in late July, and hundreds of Elk! It is such a joy to be with people who know and share our sorrow, but who also know how to have good times as well.
Although we arrived back home late last night, today we met with our son's primary oncologist to discuss the results of the autopsy report again - this time with the doctor who was primarily responsible for his treatment. It was hard to do this again, but strangely comforting to look into her eyes and see her genuine sorrow for our loss, and also her willingness to help us find ways to continue to build upon his legacy by perhaps helping to make things better for other patients.
I didn't honestly know how it was going to go - if I would be upset with her, or if I'd learn anything new; indeed, we did learn something quite new, but it was a great comfort. As we knew, the damage to his heart was extensive - in her opinion (and from reading the autopsy report) it seems most likely that the huge compromise on his system from the bacterial infection and concomitant toxins released by that infection caused his heart to get an especially strong 'demand' from his system. As she explained it, the 'electrical' system just went hay-wire and he most likely entered a state of atrial fibrillation - a cardiac arrhythmia that they had seen before, but which was much more extensive and powerful. The result was that most likely he simply became unconscious, and then died. Reflecting upon how he looked when we found him, this most certainly happened while he was asleep - no pain, no distress, but a quick and blissful release from this life.
There are many issues we want to work on - modalities of treatment, honesty and communication, and the hardest of all - some kind of monitoring for patients in his condition. I say this is the hardest because (as I told her) while wearing my 'father hat' I am somewhat relieved that he was not monitored - my fear is that he would still be in ICU hooked up to vents and monitors. She agreed that it is very likely that in that case, at some point they simply would have had to make a hard decision to remove life support. Not exactly the quiet and peaceful death he experienced. But she also said that in most cases, they would really desire to have at least a couple of beds where patients could be monitored more directly, without having to send them off to ICU or the cardiac floor where they rushed people in and out of surgery and weren't really prepared for the kind of treatment required of oncology patients. It is all a bunch of compromises, but we took notes, and talked about what we could do - in the Schwartz rounds (where they talk frankly about how things could be better, and to which we will be invited in November to talk about our son's case), and in other discussions with hospital staff and administration.
We have some very positive input regarding moving towards some kind of awareness, and possibly establishing an Adolescent and Young Adult treatment program (AYA) - which could help address many of the issues we were concerned with during his treatment.
As we left today, we understood that no one expected him to die that week - it was not clear that he was going to survive the summer - the transplant procedure, and all that entailed - his system was so damaged and compromised; but no one expected him to die when he did. There are clearly some things that will be learned about treating ALL in older adolescents which they learned from the autopsy - and perhaps it will even effect changes or modifications in the protocols. This is all good - though it won't bring back our son, it may help others in the future.
That is a nice legacy to leave - hard as it is.
So, then - what will our works be going forward? We both feel that in many ways our moorings have been severed - much of our life was devoted to making a good life and future for our son - a hope that he would have more than we did; and I suppose we did succeed in many way - but we never thought it would be so short. But we still press on - as Paul says in 1 Corinthians 3:
11 For other foundation can no man lay than that is laid, which is Jesus Christ.
12 Now if any man build upon this foundation gold, silver, precious stones, wood, hay, stubble;
13 Every man's work shall be made manifest: for the day shall declare it, because it shall be revealed by fire; and the fire shall try every man's work of what sort it is.
It seems already that the flames are lit - I can't know what this world will be like in a few years, but we have the confidence that our son is safe in Jesus' arms, and that while we are here we can work in the only way we know how to bring something better to this world because of his life. Our ultimate dream for an AYA program is not only the better physical treatment of that age group, but also a richer understanding of the social and spiritual needs they have - particularly when facing life threatening illness. I can't imagine how this might happen, but God knows. And if he calls us to some other task, I'm sure He will make it clear; for now, this is all we know.
We read a profound quote from C.S. Lewis last night in the book 'A Broken Heart Still Beats; After Your Child Dies' - a wonderful compilation of essays, poems, and thoughts by writers and artists on the death of their children, or reflections on the death of a child (given to us by our son's pediatric oncologist). He says in part (about his grief) "It doesn't really matter whether you grip the arms of the dentist's chair, or let your hands lie in your lap. The drill drills on."
Such it is with grief - but in his infinite wisdom, Lewis has captured something profound - for the dentist, despite all our pain, and the noise and discomfort, has a good end in site - the removal of a rotten portion of tooth (a cavity) and the replacing of it with something stronger which will prevent further damage. If only we can see God's hand in our grief in that wonderful way - we do not have to 'try' to redeem it to God's glory by being brave or righteous or some other unimaginable thing - but we must simply trust in the Great Physician's hands - and whether we grip the arms of our chair in pain or terror, or rest in the chair in trust and endurance, the end is the same - but we can trust His skill and intentions are for our good. As Phillipians 1:6 tells us "....he which hath begun a good work in you will perform it until the day of Jesus Christ".
And so we rejoice in the wonderful week we spent with friends - a week which passed all too quickly; but a week which reaffirmed the bond of friendship and love that passes all understanding - a foretaste of heaven, if you will permit me.
So then, let us indeed take heed how we build upon the foundation which is Christ. Pray for us that God may be glorified, and that our son may smile down upon us from Heaven and be pleased when we at last see him again in that glorious day.
Wednesday, July 30, 2008
Monday, July 21, 2008
There is a fountain
Today is my birthday - 56 years on this earth - and I can't say I've accomplished half as much as our son did in his 24 years. Does that mean we raised him well? People tell us that is so. I was thinking about election - a tricky subject, but it has a twist in our lives. Theoretically, our son might never have been born - my wife's mother had some issues that could have made it difficult or unlikely that my wife would be born, or even lived. My own father struggled mightily with homosexuality for many years - and it seems likely that if it had happened all again today, he might not have even tried to make a marriage of appearances and have two boys. Odd, yes? A digression, but I have to wonder - So does that mean that it is better to follow the plan laid out for men and women, even if it is a struggle, or would it have been better for him to follow his inclinations? I am glad for his 'struggle' - otherwise I wouldn't be here - and of course neither would our son. And I'm grateful for the kind of health care that my wife and her mother received that made it possible for her to be alive and be our son's mother. But in the end, it all seemed to hang on such a slim balance - it would be preposterous to call it 'chance' so we are left with that uncomfortable concept of election.
Psalm 139 says:
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Hard to argue with that one - our very existence is contingent upon God's will and is part of His foreknowledge. So now our line is cut off - our only son, inheritor of our genes - buried forever in the grave. Unless of course, we have an Abraham and Sarah moment - not out of the question, but I think rather unlikely.
After I wrote a note to the prayer list at church letting folks know it was ok to talk about this, and that we appreciated visits some folks stopped by, which was very nice; I also said that they didn't need to fix us, or show us the 'face' (the pity face) but to laugh with us, let us cry, and just be with us - basically trying to give folks permission to not feel awkward about a subject that we are culturally not very good at. But one encounter at church stuck in my mind - I can't say why it was so poignant, but God's mysterious grace is always suprising. A friend who is a doctor, and who herself has a lovely child with Down's syndrome, gave me a big hugh and smiled and said she was so glad to see me. It was more than the words, or the hug, or the smile - there was just true and deep grace there that I couldn't explain. We'd been having a pretty bad week - lots of hurting sadness - and this just reached in and grabbed me. Not to diminish in any way the joy we had from the other friends who visited later in the day, but it had a later effect.
As I was trying to go to sleep, I thought a lot about our son, and how we found him in the hospital bed - his face calm as if in sleep, but his hands and feet already cool to the touch. For reasons I can't explain, I began thinking about children - in this case children with disabilities - like Down's Syndrome - and suddenly in my reverie between sleep and wakefulness I was in a garden, the center of which contained a fountain. It was beautifully simply - rocks and flowers in cascading levels out to a small pond like area. Not grand, or big , but rather natural, yet it was profoundly beautiful. In this 'awake dream' these children were moving on the grass and through the flowers and water to the center of the fountain. I don't know why, but I knew that these particular children were those whose mental expression and growth on earth did not reach a level for which others could easily understand or recognize their inner souls and beauty. I was aware of having to suspend my own intellect and enter into their joy in a deeper and more non-verbal, non-'thoughtful' way - to just be in that beautiful place if I was to be in fellowship with them.
I'm doing a poor job of explaining this but it gave me the most profound sense of peace about our son - although he was not disabled in that way, he certainly had a profound struggle for many years up until his death. It was more that it gave me a sense of God's care and love - and how it transcended all of our cognitive constructs - our definitions and labels - our shoulds, and woulds, and musts. Why this image was so profound I have no idea - though I was concious of those whose young ones often do not live as long because of their condition - we have one dear friend whose son also died of heart failure - after a life living with Down's Syndrome. I don't know how to even get words around this - only that I know that our son is in a place with other souls who are profoundly happy and at peace - and for whom our own vaunted intellect is transcended by so much as to make us seem like the ones who are disabled.
I can't explain these often bizarre flashes of grace - but I am grateful for them in so many ways. The sermon the past couple of weeks have been about Peter stepping out of the boat to come to Jesus on the water. What an intellectually stupid thing to do - and yet, there you have it recorded for all time. What does it mean to step outside of our intellect for a moment and see the transcendent call of Jesus to come to Him.
Matthew 14
28 "Lord, if it's you," Peter replied, "tell me to come to you on the water."
29 "Come," he said.
Another one of those pithy, short verses - 'Come' - what do you do with that except step out of the boat?
So there we were in the 'wake dream', before the fountain and it was true joy and bliss and I was comforted for our loss. And I have no idea what it means except that God is good, and true, and merciful and there are just things we can't comprehend right now. But we still grieve the loss - we can't bring him back, but we will join him some day - and there is a fountain......
There is a fountain filled with blood drawn from Emmanuel’s veins;
And sinners plunged beneath that flood lose all their guilty stains.
Lose all their guilty stains, lose all their guilty stains;
And sinners plunged beneath that flood lose all their guilty stains.
Psalm 139 says:
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Hard to argue with that one - our very existence is contingent upon God's will and is part of His foreknowledge. So now our line is cut off - our only son, inheritor of our genes - buried forever in the grave. Unless of course, we have an Abraham and Sarah moment - not out of the question, but I think rather unlikely.
After I wrote a note to the prayer list at church letting folks know it was ok to talk about this, and that we appreciated visits some folks stopped by, which was very nice; I also said that they didn't need to fix us, or show us the 'face' (the pity face) but to laugh with us, let us cry, and just be with us - basically trying to give folks permission to not feel awkward about a subject that we are culturally not very good at. But one encounter at church stuck in my mind - I can't say why it was so poignant, but God's mysterious grace is always suprising. A friend who is a doctor, and who herself has a lovely child with Down's syndrome, gave me a big hugh and smiled and said she was so glad to see me. It was more than the words, or the hug, or the smile - there was just true and deep grace there that I couldn't explain. We'd been having a pretty bad week - lots of hurting sadness - and this just reached in and grabbed me. Not to diminish in any way the joy we had from the other friends who visited later in the day, but it had a later effect.
As I was trying to go to sleep, I thought a lot about our son, and how we found him in the hospital bed - his face calm as if in sleep, but his hands and feet already cool to the touch. For reasons I can't explain, I began thinking about children - in this case children with disabilities - like Down's Syndrome - and suddenly in my reverie between sleep and wakefulness I was in a garden, the center of which contained a fountain. It was beautifully simply - rocks and flowers in cascading levels out to a small pond like area. Not grand, or big , but rather natural, yet it was profoundly beautiful. In this 'awake dream' these children were moving on the grass and through the flowers and water to the center of the fountain. I don't know why, but I knew that these particular children were those whose mental expression and growth on earth did not reach a level for which others could easily understand or recognize their inner souls and beauty. I was aware of having to suspend my own intellect and enter into their joy in a deeper and more non-verbal, non-'thoughtful' way - to just be in that beautiful place if I was to be in fellowship with them.
I'm doing a poor job of explaining this but it gave me the most profound sense of peace about our son - although he was not disabled in that way, he certainly had a profound struggle for many years up until his death. It was more that it gave me a sense of God's care and love - and how it transcended all of our cognitive constructs - our definitions and labels - our shoulds, and woulds, and musts. Why this image was so profound I have no idea - though I was concious of those whose young ones often do not live as long because of their condition - we have one dear friend whose son also died of heart failure - after a life living with Down's Syndrome. I don't know how to even get words around this - only that I know that our son is in a place with other souls who are profoundly happy and at peace - and for whom our own vaunted intellect is transcended by so much as to make us seem like the ones who are disabled.
I can't explain these often bizarre flashes of grace - but I am grateful for them in so many ways. The sermon the past couple of weeks have been about Peter stepping out of the boat to come to Jesus on the water. What an intellectually stupid thing to do - and yet, there you have it recorded for all time. What does it mean to step outside of our intellect for a moment and see the transcendent call of Jesus to come to Him.
Matthew 14
28 "Lord, if it's you," Peter replied, "tell me to come to you on the water."
29 "Come," he said.
Another one of those pithy, short verses - 'Come' - what do you do with that except step out of the boat?
So there we were in the 'wake dream', before the fountain and it was true joy and bliss and I was comforted for our loss. And I have no idea what it means except that God is good, and true, and merciful and there are just things we can't comprehend right now. But we still grieve the loss - we can't bring him back, but we will join him some day - and there is a fountain......
There is a fountain filled with blood drawn from Emmanuel’s veins;
And sinners plunged beneath that flood lose all their guilty stains.
Lose all their guilty stains, lose all their guilty stains;
And sinners plunged beneath that flood lose all their guilty stains.
Saturday, July 12, 2008
Pressing On
It seems oddly harder these days - the grief seems deeper and more painful - I've heard that this is normal, but its depth still comes as some surprise. We are trying to clean out our son's room this weekend - and little things are really tripping me up; his clothes for one - we plan to pack them up and take them to Goodwill - of course we'll probably save a couple of things, and friends have already taken some or asked for specific pieces to remember him by. Yet I find it terribly hard to do - I've never thought that I would be one of those people who closed up the room and left it as some kind of grim 'memorial' yet I find it exceedingly hard to get through this.
Part of it is all mixed up in my being a pack rat anyway - it was rather hard to take several boxes or R/C car, PC Gamer, and assorted audio technical magazines to the recycling center today - both because that is the sort of stuff I tend to also collect, and because it was a reminder of how much alike we were in that way.
Friends are here again this weekend, so that helps - and another friend came by yesterday and took the 4 computers that were going to be 'someday' projects that were in his room. They will go to a local place that refurbishes computers by putting Linux and open source productivity software on them and makes them available to people who need them. Keeping them out of landfills, and providing people with limited resources with usable computers - and I know that he would approve.
Of course, the hardest thing in all of this is that it is an increasingly tangible reminder that he is not coming home again - not to this house anyway; I was thinking about the first night I held him in my arms when he came home from the hospital as a baby - a mixture of awe and love and fear. He was a living soul, who was our responsibility for the rest of his life; his mother wasn't coming to get him later - we were the ones. I was struck with the immensity of that responsibility and the awesome idea that the fate of his very soul hung in the balance in no small part due to how we raised and trained him in the knowledge and fear of God.
We were mostly Baptist then - I had not experienced the 'other' mysteries that God would teach us in our time at the Christian Reformed Church - very Calvinist - election, and predestination and the like - so I was not yet so persuaded about God's immutable claim on him (or not?). Early on my wife said she prayed and, like Samuel's mother, gave him to God. I confess it took me much longer to do that...
But we do have the joy of knowing that he did run his race well, and obtained the prize - and nothing left behind is really of much significance; relics of a true and wonderful life, but in themselves of no immediate value to us - and as I'm finding now, they can represent a snare and a burden in some ways. Of course we will never forget him - and there will be things we will want to keep as remembrances - but it's not likely that dozens of t-shirts and shorts and suits and all the accumulated wardrobe of a normal 24 year old's life will ultimately have any lasting value to us.
My mother shared that when her brother's wife died of cancer, he left the house for several hours leaving instruction with his sisters to 'clear all the clothes out of the house' that belonged to his wife. He returned and found clothes in the closet, which he grabbed up and angrily took out to his sisters demanding to know why they hadn't taken them out as well - but of course, my mom pointed out that those were the clothes she had brought when she came to stay with them - and that they were her's, not his wifes. It is only recently that I understood his reaction - perhaps I just need to make one brave, quick pass to find a special t-shirt, or bandanna, or other remembrance, and then let our friends bundle it all up in boxes and take it away, so we can get on with the business of setting up the room he wanted as a 'refuge' or 'dorm' for traveling missionaries, students, friends, or other wayward souls in need of some kind of sanctuary or resting place.
As Paul says in Hebrews 12:1-3:
1 Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us,
2 Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God.
3 For consider him that endured such contradiction of sinners against himself, lest ye be wearied and faint in your minds.
I see how easily I can be chained to the past in ways that are not honoring of him or God - so I need to press on and find again the path of the race set before us until we meet him again in heaven.
Part of it is all mixed up in my being a pack rat anyway - it was rather hard to take several boxes or R/C car, PC Gamer, and assorted audio technical magazines to the recycling center today - both because that is the sort of stuff I tend to also collect, and because it was a reminder of how much alike we were in that way.
Friends are here again this weekend, so that helps - and another friend came by yesterday and took the 4 computers that were going to be 'someday' projects that were in his room. They will go to a local place that refurbishes computers by putting Linux and open source productivity software on them and makes them available to people who need them. Keeping them out of landfills, and providing people with limited resources with usable computers - and I know that he would approve.
Of course, the hardest thing in all of this is that it is an increasingly tangible reminder that he is not coming home again - not to this house anyway; I was thinking about the first night I held him in my arms when he came home from the hospital as a baby - a mixture of awe and love and fear. He was a living soul, who was our responsibility for the rest of his life; his mother wasn't coming to get him later - we were the ones. I was struck with the immensity of that responsibility and the awesome idea that the fate of his very soul hung in the balance in no small part due to how we raised and trained him in the knowledge and fear of God.
We were mostly Baptist then - I had not experienced the 'other' mysteries that God would teach us in our time at the Christian Reformed Church - very Calvinist - election, and predestination and the like - so I was not yet so persuaded about God's immutable claim on him (or not?). Early on my wife said she prayed and, like Samuel's mother, gave him to God. I confess it took me much longer to do that...
But we do have the joy of knowing that he did run his race well, and obtained the prize - and nothing left behind is really of much significance; relics of a true and wonderful life, but in themselves of no immediate value to us - and as I'm finding now, they can represent a snare and a burden in some ways. Of course we will never forget him - and there will be things we will want to keep as remembrances - but it's not likely that dozens of t-shirts and shorts and suits and all the accumulated wardrobe of a normal 24 year old's life will ultimately have any lasting value to us.
My mother shared that when her brother's wife died of cancer, he left the house for several hours leaving instruction with his sisters to 'clear all the clothes out of the house' that belonged to his wife. He returned and found clothes in the closet, which he grabbed up and angrily took out to his sisters demanding to know why they hadn't taken them out as well - but of course, my mom pointed out that those were the clothes she had brought when she came to stay with them - and that they were her's, not his wifes. It is only recently that I understood his reaction - perhaps I just need to make one brave, quick pass to find a special t-shirt, or bandanna, or other remembrance, and then let our friends bundle it all up in boxes and take it away, so we can get on with the business of setting up the room he wanted as a 'refuge' or 'dorm' for traveling missionaries, students, friends, or other wayward souls in need of some kind of sanctuary or resting place.
As Paul says in Hebrews 12:1-3:
1 Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us,
2 Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God.
3 For consider him that endured such contradiction of sinners against himself, lest ye be wearied and faint in your minds.
I see how easily I can be chained to the past in ways that are not honoring of him or God - so I need to press on and find again the path of the race set before us until we meet him again in heaven.
Saturday, July 5, 2008
Sea Billows Roll
Just a quick word tonight about "Peace Like a River" by Horatio Spafford - it is a well known story that he wrote this after his four daughters drowned in a shipwreck.
What isn't always well known is that two years before, his son had died - just before the great fire in Chicago. Spafford was a lawyer, heavily invested in Chicago real estate and lost nearly everything yet continued to work helping those who had also lost everything. I'm sure there are many references, but I found a pretty good Wikipedia article that covers most of the points of the story.
Anyway, we were in the car, going to some friends' camp on Colchester Point for an evening of barbecue and fun together. I was feeling particularly sad (although looking forward to our time together on the lake) but for some reason I started thinking about the song 'When Peace Like a River' - but more particularly about the part 'When sorrows like sea billows roll' - and how Peace may flow like a river, but Sorrow indeed comes in like ocean waves; just when you think it has passed, another one rolls in on you.
It occurred to me that once again I was being reminded that whether it was 'Peace' or 'Sorrow' the real issue was whether it was 'well with my soul'. And that my faith is not dependent upon circumstances - indeed, a faith that requires only the experience of God's blessings to sustain it will soon be overturned by the trials of this life.
As I reflected upon this, a strange, bittersweet calm filled my heart - the pain of our loss was still there, but the assurance that I would someday see him - and more importantly, see my Lord Jesus - welled up inside me for a few moments.
The sadness returned, but it was a brief glimpse of a deeper truth - as the song "Good Life" says (Audio Adrenaline, again) -
Sorrow's opened up my eyes
To see what real joy is
Pain has been the catalyst
To my heart's happiness
What good would it be
If you had everything
But you wouldn't have
The only thing you need
Of course, this was one of the songs we chose for the funeral service - and others have written about the place where we find deep in the sorrow of our hearts the one place where the true 'living water' bubbles up. It was a bit stunning to have touched it briefly - I don't like digging down there too much because it hurts a lot - but that brief taste makes me less afraid of trying to get there again. The problem is it means letting the sea billows roll - but just like at the beach, if they are big enough and you try to fight them, they just knock you on your ass.....and after a while, that becomes rather pointless.
What isn't always well known is that two years before, his son had died - just before the great fire in Chicago. Spafford was a lawyer, heavily invested in Chicago real estate and lost nearly everything yet continued to work helping those who had also lost everything. I'm sure there are many references, but I found a pretty good Wikipedia article that covers most of the points of the story.
Anyway, we were in the car, going to some friends' camp on Colchester Point for an evening of barbecue and fun together. I was feeling particularly sad (although looking forward to our time together on the lake) but for some reason I started thinking about the song 'When Peace Like a River' - but more particularly about the part 'When sorrows like sea billows roll' - and how Peace may flow like a river, but Sorrow indeed comes in like ocean waves; just when you think it has passed, another one rolls in on you.
It occurred to me that once again I was being reminded that whether it was 'Peace' or 'Sorrow' the real issue was whether it was 'well with my soul'. And that my faith is not dependent upon circumstances - indeed, a faith that requires only the experience of God's blessings to sustain it will soon be overturned by the trials of this life.
As I reflected upon this, a strange, bittersweet calm filled my heart - the pain of our loss was still there, but the assurance that I would someday see him - and more importantly, see my Lord Jesus - welled up inside me for a few moments.
The sadness returned, but it was a brief glimpse of a deeper truth - as the song "Good Life" says (Audio Adrenaline, again) -
Sorrow's opened up my eyes
To see what real joy is
Pain has been the catalyst
To my heart's happiness
What good would it be
If you had everything
But you wouldn't have
The only thing you need
Of course, this was one of the songs we chose for the funeral service - and others have written about the place where we find deep in the sorrow of our hearts the one place where the true 'living water' bubbles up. It was a bit stunning to have touched it briefly - I don't like digging down there too much because it hurts a lot - but that brief taste makes me less afraid of trying to get there again. The problem is it means letting the sea billows roll - but just like at the beach, if they are big enough and you try to fight them, they just knock you on your ass.....and after a while, that becomes rather pointless.
Thursday, July 3, 2008
The little things
We were talking last night about how I'm starting to worry that people are ready for us to be done now - finished grieving, getting back to normal, all that kind of stuff. Its funny how I can be so hard on myself - today at work, a dear co-worker asked me how I was doing. At first I was torn between saying the usual 'ok' and saying how much I was hurting - but something in the eyes told me it was a real question. We talked about how hard it was, and I shared my fear that maybe folks were ready for me to be done and get over this - and I was assured that no one thought that at all and that it was inconceivable that anyone would; that it was a terrible loss, but that sometimes people weren't sure it was ok to talk about it, and as we spoke I saw tears start to well up in those eyes. I said I would always be happy to talk about it - and was glad that people felt that way (of course, not glad that they were sad - but that they acknowledge the loss as well), and that they still were able to grieve in some ways with us. And yes, it was wonderful to talk about it with someone who truly cared.
God is faithful in the little things - it was just what I needed to get through the day. I always have loved Mindy Smiths album "One Moment More" - and from 'Down in Flames' she sings:
It's the little things that seem to be saving me today, yeah
Life's so hard
And I'm doing what I can
Oh, yeah, I'm doing what I can
Hey, I'm doing what I can
Going down in flames
Going down in flames
The little things often are not so little after all....
God is faithful in the little things - it was just what I needed to get through the day. I always have loved Mindy Smiths album "One Moment More" - and from 'Down in Flames' she sings:
It's the little things that seem to be saving me today, yeah
Life's so hard
And I'm doing what I can
Oh, yeah, I'm doing what I can
Hey, I'm doing what I can
Going down in flames
Going down in flames
The little things often are not so little after all....
Art and Science
We spent time at the hospital yesterday going over the autopsy report. Our son's oncologist from his days in the pediatric ward graciously spent a great deal of time with us, as did the social worker we have come to know and love. His current oncologist was not available but I imagine we'll spend some time with her at some point.
The biggest part of it was some kind of closure - although we had previously had some controversies about the manner of his recent care, there was really nothing in the report that would indicate anything more than that he was a very, very sick young man - and apparently exceedingly brave. The main cause of death was heart failure - he had congestive heart failure '..consistent with anthrocycline induced cardiomyopathy' - fancy talk for late damage to his heart from the two previous, heavy rounds of chemotherapy. He also had extensive infections (bacterial and candida) throughout his body and internal organs which most likely contributed to the overall stress on his system. It's terribly hard to read something like this - we were so grateful that a friend drove nearly two hours to be with us in the afternoon.
But even the doctor was a bit puzzled by some elements of the report - in the sense that some things seemed clear, some were less clear - and as a researcher and clinician, he of course will go over this and perhaps learn something valuable that might help other patients - and that was our hope. As never before I understood why medicine is called an Art - it is a scientific art, but it is not as black and white as we'd like to think. Trying to intuit what is going on inside the complex (fearfully and wonderfully made) closed system of the body by looking at clues gleaned from the outside is anything but precise. As advanced as modern medicine is, with all the diagnostic tools at their disposal, there are simply things they can't know; things only an autopsy can tell them - and therefore advance the 'art' a bit more.
I could feel my deep struggle - the conflict between wanting to be reassured that nothing bad had been done, or not done, that hastened his death - but also struggling with letting go of that last dark and desparate need to find something or someone to blame that was still lingering deep in my heart - something to 'explain it all' and someone to strike out at in my hurt and anger. Ah, the way men process grief - let no one tell you men and women are the same; but thank God we are not - for in our differences, we often intersect and comfort each other in ways and times that could not happen if we grieved exactly the same.
We are complicated creatures - the heart has mysterious ways beyond our understanding. Even while I struggled through that dark corridor, I also recalled the strong confidence we had the night of his death, and in the days after, that God's hand was ever present; each little sign post and marker along the way that comforted us with the assurance that nothing was left to chance - even though it is so hard to bear. Reading of all the compromises to his poor body - I can't imagine how it was that he didn't cry out in pain constantly in those last days and weeks.
Yet it was his calm demeanor, and his peace with it all on so many levels that made the suddenness of his passing such a shock - as if it never occurred to any of us that he was so close to death. Perhaps no one really knew - but God clearly did - there were just too many things in retrospect that make us believe that. That he was ready to be with his beloved Lord Jesus was never in doubt - but that he wanted to get better and get on with his life here was also never in doubt. It is indeed a mystery that we never know the full answer to.
Nevertheless, we are still pursuing ways to make care better for others - including a contact I received today from the LiveStrong foundation (in response to my inquiry about how to help move things towards having an AYA (Adolescent and Young Adult) treatment program. I am very encouraged by their positive and quick response - from a doctor at a major university hospital where such a program exists. I pray that it may be so that all the 'lines fall in pleasant places' and that this may come to pass. There is such a need for a place where young people can make the transition between pediatric and adult care - they are currently worlds apart in so many ways.
In God's infinite wisdom, we also spent time this morning with a friend who is a missionary in France - and is supporting a space for artists - artists who are Christians primarily, but not 'Christian Art' as some kind of limiting construct. All artists are welcome to participate, to use the space, to exhibit - but they are surrounded by the love and care and hearts for God of these people and many artists who are Christians. Art - music, painting, poetry, etc. - reaches beyond and between the barriers to merely 'propositional truth' presented as words which are often heavily laden with bad associations for many seekers. And so it is - Art and Science, and science that is art - in all of these God is glorified and His creation and love and purpose unfold around us.
So, even with the autopsy report before us - the quest for how, and yes, even much of the why? still eludes us really - but there is some closure; and more work to be done. As Paul reminds us in Hebrews 12
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.
Pray for us that we might run to God's glory, and in honor of our son's brief but beautiful life.
The biggest part of it was some kind of closure - although we had previously had some controversies about the manner of his recent care, there was really nothing in the report that would indicate anything more than that he was a very, very sick young man - and apparently exceedingly brave. The main cause of death was heart failure - he had congestive heart failure '..consistent with anthrocycline induced cardiomyopathy' - fancy talk for late damage to his heart from the two previous, heavy rounds of chemotherapy. He also had extensive infections (bacterial and candida) throughout his body and internal organs which most likely contributed to the overall stress on his system. It's terribly hard to read something like this - we were so grateful that a friend drove nearly two hours to be with us in the afternoon.
But even the doctor was a bit puzzled by some elements of the report - in the sense that some things seemed clear, some were less clear - and as a researcher and clinician, he of course will go over this and perhaps learn something valuable that might help other patients - and that was our hope. As never before I understood why medicine is called an Art - it is a scientific art, but it is not as black and white as we'd like to think. Trying to intuit what is going on inside the complex (fearfully and wonderfully made) closed system of the body by looking at clues gleaned from the outside is anything but precise. As advanced as modern medicine is, with all the diagnostic tools at their disposal, there are simply things they can't know; things only an autopsy can tell them - and therefore advance the 'art' a bit more.
I could feel my deep struggle - the conflict between wanting to be reassured that nothing bad had been done, or not done, that hastened his death - but also struggling with letting go of that last dark and desparate need to find something or someone to blame that was still lingering deep in my heart - something to 'explain it all' and someone to strike out at in my hurt and anger. Ah, the way men process grief - let no one tell you men and women are the same; but thank God we are not - for in our differences, we often intersect and comfort each other in ways and times that could not happen if we grieved exactly the same.
We are complicated creatures - the heart has mysterious ways beyond our understanding. Even while I struggled through that dark corridor, I also recalled the strong confidence we had the night of his death, and in the days after, that God's hand was ever present; each little sign post and marker along the way that comforted us with the assurance that nothing was left to chance - even though it is so hard to bear. Reading of all the compromises to his poor body - I can't imagine how it was that he didn't cry out in pain constantly in those last days and weeks.
Yet it was his calm demeanor, and his peace with it all on so many levels that made the suddenness of his passing such a shock - as if it never occurred to any of us that he was so close to death. Perhaps no one really knew - but God clearly did - there were just too many things in retrospect that make us believe that. That he was ready to be with his beloved Lord Jesus was never in doubt - but that he wanted to get better and get on with his life here was also never in doubt. It is indeed a mystery that we never know the full answer to.
Nevertheless, we are still pursuing ways to make care better for others - including a contact I received today from the LiveStrong foundation (in response to my inquiry about how to help move things towards having an AYA (Adolescent and Young Adult) treatment program. I am very encouraged by their positive and quick response - from a doctor at a major university hospital where such a program exists. I pray that it may be so that all the 'lines fall in pleasant places' and that this may come to pass. There is such a need for a place where young people can make the transition between pediatric and adult care - they are currently worlds apart in so many ways.
In God's infinite wisdom, we also spent time this morning with a friend who is a missionary in France - and is supporting a space for artists - artists who are Christians primarily, but not 'Christian Art' as some kind of limiting construct. All artists are welcome to participate, to use the space, to exhibit - but they are surrounded by the love and care and hearts for God of these people and many artists who are Christians. Art - music, painting, poetry, etc. - reaches beyond and between the barriers to merely 'propositional truth' presented as words which are often heavily laden with bad associations for many seekers. And so it is - Art and Science, and science that is art - in all of these God is glorified and His creation and love and purpose unfold around us.
So, even with the autopsy report before us - the quest for how, and yes, even much of the why? still eludes us really - but there is some closure; and more work to be done. As Paul reminds us in Hebrews 12
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.
Pray for us that we might run to God's glory, and in honor of our son's brief but beautiful life.
Tuesday, July 1, 2008
Grace to grace
Our neighbor Chris lent us a CD - Fernando Ortega - "The Shadow of Your Wings" - with Turtle Island String Quartet. It was just the perfect thing tonight - "All flesh is grass, the grass withers and fades - The glory of man that like a flower shrivels in the sun and fails, but the word of the Lord endures forever" - Isaiah 40:6-8, and quoted in 1 Peter 1:24-25.
Truly an Spirit anointed CD - peaceful comfort for a sad evening....
Truly an Spirit anointed CD - peaceful comfort for a sad evening....
As good as it gets....
No word yet from the hospital as to when we can meet with the docs to go over the autopsy. The wife and I spent some time in the blow up 'floaties' out in the blow-up pool in the back yard this evening talking - we both decided that today we both had the same thought that maybe we weren't going to ever feel better. I think this might be a common thought in the midst of grief - but of course it is all new territory for us.
It gives me a totally new understanding of that scene where Jack Nicholson walks through his therapist's waiting room and looks at all the patients and says 'What if this is as good as it gets?'.
I had to have a long talk with God about that - I want Him to enter into our hearts more fully and fill up the hurt and empty places, and I have a fair amount of confidence (faith?) that this will be so. Still, the words of 'Get Down' were rolling through my head "This valley is so deep, I can barely see the sun - I cry out for mercy Lord, and He lifts me up again" (Audio Adrenaline). I wonder if it is a function of our generation that everything seems to frame itself in snippets of either popular culture or scripture (or both)?
We miss him more than we ever thought possible - I think this is going to be a very long hard road ahead....oddly, today I thought - it's been a month - I bet everyone else is pretty much thinking its time for us to move on; that might not be true (or fair) but I do wonder...
"I get down, He lifts me up..."
It gives me a totally new understanding of that scene where Jack Nicholson walks through his therapist's waiting room and looks at all the patients and says 'What if this is as good as it gets?'.
I had to have a long talk with God about that - I want Him to enter into our hearts more fully and fill up the hurt and empty places, and I have a fair amount of confidence (faith?) that this will be so. Still, the words of 'Get Down' were rolling through my head "This valley is so deep, I can barely see the sun - I cry out for mercy Lord, and He lifts me up again" (Audio Adrenaline). I wonder if it is a function of our generation that everything seems to frame itself in snippets of either popular culture or scripture (or both)?
We miss him more than we ever thought possible - I think this is going to be a very long hard road ahead....oddly, today I thought - it's been a month - I bet everyone else is pretty much thinking its time for us to move on; that might not be true (or fair) but I do wonder...
"I get down, He lifts me up..."
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