I've put two "loss lists" on this blog so far. I have another one in mind today. I'm not sure how to explain it. It's a list of the holes that Joel will leave, I guess. Many of the things on the list, are things I'd normally be so glad to get rid off. It would be a list of rejoicing if losing them meant Joel was well. But now the list leaves me in a very strange emotional landscape. Of course, right after I wrote the line about Joel being well, I gave a small laugh at the irony. Because of course, this list DOES mean that Joel is well. He's just well without me there to see it. And that is a big bummer.
So this list places me in a strange landscape of very mixed feelings. I'll just write the list. Maybe you will see what I mean.
Medications. When Joel is gone, I will lose a shelf full of meds. I'm pouring them straight down the sink with tears pouring down my face on the day he dies, and maybe you can see why I can't explain the feelings this gives me. But that is what I'm going to do. Pour bottle after bottle down the drain and throw the bottles in the garbage. Along with the oral syringes. I'll be losing three med times a day, morning, afternoon, and evening. 10pm will come, but there will be no need to go and get the meds.
Joey Pump with bags and IV pole. I'll be return this item, I won't throw it in the garbage, don't worry. When I return this item I will be donating the little stand my father made for me to the RRC for some other child to use. We'll be losing three "feeding" times and two "drinking" times a day. I won't have to mix up milk, or put suppliments in it. I won't have to clean the bag out and rinse it. No more formula sitting in my cupboard. The first thing I do every morning (after I kiss Joel) will not be to make up his milk and hook him up.
One CPAP complete with tubing and face mask and monitor. It will no longer sit on our dresser in our bedroom. I won't be cleaning it out once a week and soaking it in vinegar water. I won't be hooking up it Joel every night, probe on his toe, fresh water in the humidifier, placing the mask on his face and adjusting the straps. There will be no light flickering a heart rate in the darkness. There will be only silence, no hum of a machine.
Two playpens. I don't know what I'll do with these items, or the crib in our bedroom. Not something I can think about right now, to be honest. But they won't stay in our living room, downstairs family room, or bedroom for ever empty. Eventually they will have to go. And when they do, for months I will look at the chair or dresser or whatever happens to replace them with a sense of shock and surprise.
Appointments. I'll be losing those, and you all know that they are something I've been trying to lose for a while now. Just not this way. The calendar will be empty. I wonder if I will miss any of the doctors? I'll be losing the phone calls to the neurology nurse and the emails to the palliative care nurse. I'll no longer be walking into Children's Hospital as if it were my second home. Believe me, that gives me a VERY strange feeling.
My "housebound" lifestyle. What can I say about the freedom I will suddenly have gained? How we'll be able to go anywhere at any time and all together? How we can go on trips, even to PEI for a visit? I'll go out in the evenings with friends and be free of guilt. But only until I realize once again the cost of the freedom. For every time we go out, will we not feel guilty that we can go out, and sorrow too for the reason why? A vacation will be a very bittersweet thing, we will think of little else except how we wish we could have taken Joel on one.
The tension, the stress, the worry. Whatever you wish to call it. The constant monitoring that I do. Checking breathing, checking temperature, checking diapers. Worrying at least once a week over whether we are heading for the hospital. The whole thing. I'll be losing that. Oddly, for awhile I'll just be gaining it all back. As C.S.Lewis pointed out, there is that in grief which feels oddly like fear or anxiety. And the sudden loss of needing to check and monitor will leave me feeling anxious. There will be a hole in my existence, like a missing tooth, and my mind will keep going back there to "worry" at it. I'll have a constant sense of "something's wrong" as I keep reminding myself of what that is.
I could go on, but I think I have said the big ones, and certainly enough to give you the idea of what I mean. The landscape I'm talking about. The mix of relief, guilt, sorrow, longing, freedom, regret, the whole big mish mash. And other feelings I can't even begin to describe.
This blog has reduced me to a sodden mess. I've surprised myself with how much pain is in the loss of all these terrible things, and I've been weeping silently trying to keep Melanie from hearing me, as she's here for respite and keeping Joel happy right now.
Strange isn't it? All these tasks, all these hated interventions, all the chains they put on us. All of them are part of life with Joel. And when he's gone, they will leave a very large, if very strange, sort of hole in our lives. They are a different kind of loss list.
Tuesday, November 30, 2010
The Voice
Things have been good now every since September. By which I mean that Joel has not been admitted to hospital, and we've had only the "usual" sort of difficulties. We have been "stable."
So, for the most part, other than appointment annoyances and Christmas blues, I've been feeling pretty good. There is this other part though. The voice that always whispers "This good time can't last." This Sunday, sitting in church, the voice was whispering and whispering to me. I thought I might have to leave and go cry somewhere. But I ignored it away.
The truth, though, is that the voice is right. It's warning me not to get to complacent or relaxed about it all. I really don't want you to think this voice steals all my joy. It sometimes chills me. It sometimes scares me. But it's not the sort of thing that can steal my joy.
It's more that when I'm out on respite and then we head for home, the voice is whispering, "this could be the time you come home and find an ambulance in your driveway... " and I'm so happy and relieved when it's not. I walk into the house to my comfortable little boy and I hold him. And the voice whispers "This could be your last chance to be so happy coming home to his little face." And I kiss him all over his face. Sometimes I let him rest in his bed and clean (or worse, read a book!), then I fret to myself, what if he dies tomorrow, will I regret I'm not holding him right now?
This voice is not my enemy and it is not my friend. It's just a truth that I keep hearing, one that is never far away from my heart. At times I feel a sort of panic. And other times I almost feel a sense of reverence, for the moment I have.
I'm writing this here and now, because I don't want anyone to think that even though things are well and I'm doing good, I don't want you to think I ever lose sight of the truth of it all. Which is that a child in Joel's fragile condition can have a "sudden" down turn at any time. And that as far as the future goes, his time seems fairly limited. This never leaves me, even in the good times.
I'm hoping this good time last until Christmas. No guarantee. This is my hope though. One more happy and NON-hospital Christmas together.
But January scares me. I'm dreading more illness, more hospital time, and less and less of Joel. The months of January and February have not, traditionally, been my best months. I miss the light of longer days by then, and there are no holidays to cheer me. I'm afraid of how hard a down turn, or Joel's death, might be for me during that time.
I'm trying to trust God with that. I have prayed that God will take Joel home in a "good" time for us all, one where Steve doesn't have to worry about performance in his job, where he can grieve without job stress. I have prayed that God will take Joel home without a lot of illness, without a long hospital stay. That is all I can do for now.
And I stop and listen to the voice. It keeps me real, and it helps me keep my priorities where I want them. On Joel, and the rest of my family.
So, for the most part, other than appointment annoyances and Christmas blues, I've been feeling pretty good. There is this other part though. The voice that always whispers "This good time can't last." This Sunday, sitting in church, the voice was whispering and whispering to me. I thought I might have to leave and go cry somewhere. But I ignored it away.
The truth, though, is that the voice is right. It's warning me not to get to complacent or relaxed about it all. I really don't want you to think this voice steals all my joy. It sometimes chills me. It sometimes scares me. But it's not the sort of thing that can steal my joy.
It's more that when I'm out on respite and then we head for home, the voice is whispering, "this could be the time you come home and find an ambulance in your driveway... " and I'm so happy and relieved when it's not. I walk into the house to my comfortable little boy and I hold him. And the voice whispers "This could be your last chance to be so happy coming home to his little face." And I kiss him all over his face. Sometimes I let him rest in his bed and clean (or worse, read a book!), then I fret to myself, what if he dies tomorrow, will I regret I'm not holding him right now?
This voice is not my enemy and it is not my friend. It's just a truth that I keep hearing, one that is never far away from my heart. At times I feel a sort of panic. And other times I almost feel a sense of reverence, for the moment I have.
I'm writing this here and now, because I don't want anyone to think that even though things are well and I'm doing good, I don't want you to think I ever lose sight of the truth of it all. Which is that a child in Joel's fragile condition can have a "sudden" down turn at any time. And that as far as the future goes, his time seems fairly limited. This never leaves me, even in the good times.
I'm hoping this good time last until Christmas. No guarantee. This is my hope though. One more happy and NON-hospital Christmas together.
But January scares me. I'm dreading more illness, more hospital time, and less and less of Joel. The months of January and February have not, traditionally, been my best months. I miss the light of longer days by then, and there are no holidays to cheer me. I'm afraid of how hard a down turn, or Joel's death, might be for me during that time.
I'm trying to trust God with that. I have prayed that God will take Joel home in a "good" time for us all, one where Steve doesn't have to worry about performance in his job, where he can grieve without job stress. I have prayed that God will take Joel home without a lot of illness, without a long hospital stay. That is all I can do for now.
And I stop and listen to the voice. It keeps me real, and it helps me keep my priorities where I want them. On Joel, and the rest of my family.
Thursday, November 25, 2010
Let music sing again
Back last January, Joel got his hearing testing with a sedated ABR, and his hearing was still good enough he didn't need hearing aids. It was wonderful news, and when my metabolic doctor heard, he got a huge smile on his face and said "That's great! Now sing to him lots!"
The thing is, I really couldn't. I mean, it was physically impossible. Not because of a mechanical problem with my voice. But because trying to sing just about any song since Joel's diagnosis had made me cry. Have you ever tried to sing and cry? I mean, you might be able to sing if it's just a few tears trickling down your face. But when I tried to sing my throat closed up and funny tones and squeaks came out and my voice warbled in a way that made it impossible. My throat sometimes closed up so much that NOTHING came out of my mouth.
I used to love music. I listened to it often and went out and bought favorite CD's and stuff. Since our diagnosis, it's been silence that I loved. Not that I got a lot of it, what with Treehouse on TV and a young child and a fussing baby/toddler and all that. But I found, at times when I put the music on, that it was just NOISE. It feel so much more peaceful just to turn it off. And most of the time I did, unless it was kid's music.
Yeah. Silence. I craved silence. I used to sing to myself, when I didn't have music on. I would lilt around the kitchen singing every song I knew, and believe me, I know a lot of songs from church and from camp and all that. But in the months following Joel's diagnosis, I just wanted silence with my thoughts, and if I tried to put my thoughts into music, then tears inevitably followed.
I felt guilty that I could not sing to Joel. After all, it's not like he really saw my face. There was so little to amuse him besides me, and I couldn't choke out songs. So I felt bad.
Though he showed little response to my singing, when I did try. It didn't really seem to calm his crying or anything. I never saw a smile in response to it. He seemed pretty blank about it all.
But slowly, little by little, I've started to sing again. I've been able to make it through a few songs in church without having to stop. More every time. And I've started singing around the house again. And listening to some of my CD's.
I've started singing to Joel more too. And funny thing is, yesterday and today, he seemed to like it. He almost seemed to crave it, it made him happier and more relaxed. And surprise of all surprises, for the first time ever, he started to smile in response to my singing.
The last few days have been really hard for me. I've wept a lot and been generally more emotional. This morning I didn't much feel like getting out of bed.
But slowly, over time, it seems like the music is coming back. And no matter how bad I feel, if the music is coming back, that surely is a good thing. Joel thinks so, anyway.
The thing is, I really couldn't. I mean, it was physically impossible. Not because of a mechanical problem with my voice. But because trying to sing just about any song since Joel's diagnosis had made me cry. Have you ever tried to sing and cry? I mean, you might be able to sing if it's just a few tears trickling down your face. But when I tried to sing my throat closed up and funny tones and squeaks came out and my voice warbled in a way that made it impossible. My throat sometimes closed up so much that NOTHING came out of my mouth.
I used to love music. I listened to it often and went out and bought favorite CD's and stuff. Since our diagnosis, it's been silence that I loved. Not that I got a lot of it, what with Treehouse on TV and a young child and a fussing baby/toddler and all that. But I found, at times when I put the music on, that it was just NOISE. It feel so much more peaceful just to turn it off. And most of the time I did, unless it was kid's music.
Yeah. Silence. I craved silence. I used to sing to myself, when I didn't have music on. I would lilt around the kitchen singing every song I knew, and believe me, I know a lot of songs from church and from camp and all that. But in the months following Joel's diagnosis, I just wanted silence with my thoughts, and if I tried to put my thoughts into music, then tears inevitably followed.
I felt guilty that I could not sing to Joel. After all, it's not like he really saw my face. There was so little to amuse him besides me, and I couldn't choke out songs. So I felt bad.
Though he showed little response to my singing, when I did try. It didn't really seem to calm his crying or anything. I never saw a smile in response to it. He seemed pretty blank about it all.
But slowly, little by little, I've started to sing again. I've been able to make it through a few songs in church without having to stop. More every time. And I've started singing around the house again. And listening to some of my CD's.
I've started singing to Joel more too. And funny thing is, yesterday and today, he seemed to like it. He almost seemed to crave it, it made him happier and more relaxed. And surprise of all surprises, for the first time ever, he started to smile in response to my singing.
The last few days have been really hard for me. I've wept a lot and been generally more emotional. This morning I didn't much feel like getting out of bed.
But slowly, over time, it seems like the music is coming back. And no matter how bad I feel, if the music is coming back, that surely is a good thing. Joel thinks so, anyway.
Tuesday, November 23, 2010
Blue Christmas
I didn't really know what else to call this blog, though I think it's not a strictly accurate name.
It's just that I'm feeling some ambivalence towards Christmas this year. Not about the meaning of Christmas. Not about the message behind it the celebration. Just about the celebrating part of it.
I've been listening to Christmas music, which isn't hard for me because I LOVE the music. I've been known to listen to it in the middle of summer, yessir! I've been decorating the house, and that one has been strangely difficult for me, because I usually love to make my home have that "Christmas-y" look. All glowing and warm and joyous.
But this year it seems like a lot of work. And I'm not feeling as glowing, warm and joyous about it all. Christmas seems a bit hard this year.
It might be because I believe this will likely be Joel's last Christmas with us. I have a hard time imagining him make it for another full year, though it's possible. And surely I know that next year, there will be LESS left of Joel. Just like this year there is less of him then last year. And that all feels pretty sad.
I mean, it also makes this Christmas pretty special. Every time we do something, we'll be thinking this might be the last time we do it with Joel here. So it makes it all very, very precious. But sad too. Bittersweet.
And too, while every year there is a bit less of Joel, it feels like there is less FOR him too. Buying gifts for Joel always sort of bums me out. At least, it has since his first b-day when I bought him this amazing floor mat, but then he went downhill right after that, and barely enjoyed it at all. For Christmas last year I searched hard to find him something for his stocking. I was relieved, satisfied, maybe even delighted, to find him a chew toy that vibrated, a little massage tool because he was enjoying massages, and a tooth brush set with gum massager included.
This year, I got nothing. I mean, I bought him a couple of pairs of pj's. Not really "normal" two year old fare. Sure, I know, pj's are a great gift. If you think that idea can make me feel better - guess again. And family and friends ask what to get him. What do I say? Clothes. Yup. Clothes. Pretty imaginative stuff, huh?
Here's a little note of joy for my friend, Caroline. I'm not making this up. When I let Joel feel Ross's little Hedgie, he did smile. And I've not really seen much reaction to tactile stuff from him. But there was something about Hedgie that made him smile!
I just don't have it in me anymore, though, to try and buy any tactile stuff. It's so disappointing, because so often Joel just really isn't that interested in playing. If he is playful, he's more interested in getting kisses and zerberts on the palms of his hands, and talking and such. Which, I'm not knocking as it's own sort of gift. But you can't wrap it and put it under the tree with the rest of the gifts and it just makes me sad, is all.
If this is Joel's last Christmas, I just wish I could give him one that was equal in excitement and happiness to what his older brother will get.
I hope that doesn't make you feel too sad or too bad. I'm still looking forward to our family Christmas. And I'm SUPER grateful to have Joel here for another one. At least, I hope he'll be here. Don't get me started on how THAT feels, knowing that at any time that could change, and Joel wouldn't even be here.
It's just that I'm feeling happy, excited, and blue. All at the same time.
It's just that I'm feeling some ambivalence towards Christmas this year. Not about the meaning of Christmas. Not about the message behind it the celebration. Just about the celebrating part of it.
I've been listening to Christmas music, which isn't hard for me because I LOVE the music. I've been known to listen to it in the middle of summer, yessir! I've been decorating the house, and that one has been strangely difficult for me, because I usually love to make my home have that "Christmas-y" look. All glowing and warm and joyous.
But this year it seems like a lot of work. And I'm not feeling as glowing, warm and joyous about it all. Christmas seems a bit hard this year.
It might be because I believe this will likely be Joel's last Christmas with us. I have a hard time imagining him make it for another full year, though it's possible. And surely I know that next year, there will be LESS left of Joel. Just like this year there is less of him then last year. And that all feels pretty sad.
I mean, it also makes this Christmas pretty special. Every time we do something, we'll be thinking this might be the last time we do it with Joel here. So it makes it all very, very precious. But sad too. Bittersweet.
And too, while every year there is a bit less of Joel, it feels like there is less FOR him too. Buying gifts for Joel always sort of bums me out. At least, it has since his first b-day when I bought him this amazing floor mat, but then he went downhill right after that, and barely enjoyed it at all. For Christmas last year I searched hard to find him something for his stocking. I was relieved, satisfied, maybe even delighted, to find him a chew toy that vibrated, a little massage tool because he was enjoying massages, and a tooth brush set with gum massager included.
This year, I got nothing. I mean, I bought him a couple of pairs of pj's. Not really "normal" two year old fare. Sure, I know, pj's are a great gift. If you think that idea can make me feel better - guess again. And family and friends ask what to get him. What do I say? Clothes. Yup. Clothes. Pretty imaginative stuff, huh?
Here's a little note of joy for my friend, Caroline. I'm not making this up. When I let Joel feel Ross's little Hedgie, he did smile. And I've not really seen much reaction to tactile stuff from him. But there was something about Hedgie that made him smile!
I just don't have it in me anymore, though, to try and buy any tactile stuff. It's so disappointing, because so often Joel just really isn't that interested in playing. If he is playful, he's more interested in getting kisses and zerberts on the palms of his hands, and talking and such. Which, I'm not knocking as it's own sort of gift. But you can't wrap it and put it under the tree with the rest of the gifts and it just makes me sad, is all.
If this is Joel's last Christmas, I just wish I could give him one that was equal in excitement and happiness to what his older brother will get.
I hope that doesn't make you feel too sad or too bad. I'm still looking forward to our family Christmas. And I'm SUPER grateful to have Joel here for another one. At least, I hope he'll be here. Don't get me started on how THAT feels, knowing that at any time that could change, and Joel wouldn't even be here.
It's just that I'm feeling happy, excited, and blue. All at the same time.
Monday, November 22, 2010
Anger: Part Two
Here we go, a bit more on the topic of anger.
Previously I wrote about how I was angry at God, but not ANGRY.
I'm going to write about anger once again, but this time not the anger that might be directed toward God when something like this happens.
I'm going to talk about "marriage anger." I know there are some statistics somewhere about the dismal future prospects for those who lose a child. It's pretty negative. But I'm pretty confident that Steve and I are going to make it. Not because we are either of us so great at marriage. I think over time we have both learnt that we'll never be replacements for Dr. Phil. Well, maybe Dr. Phil is not a good example anyway. Maybe he's more of an example that being human is a state every one of us shares.
In any case, my confidence lies more in the fact that God just has not let us go through all of this. We have just seen His hand, here and there, protecting us and our marriage. I'm not going to get into all that, because this is not about marriage survival, it is about marriage anger. And even the anger part could more than fill a blog, marriage survival can fill several books.
So, I'm just going to say that in my experience one of the huge obstacles thrown up in my marriage due to everything related to Joel has been anger. Any anger, not just that which ends up directed at my husband. But especially that one.
You might think I'm saying I somehow blame Steve for Joel's illness. I'm not saying that. If you are married, then you know that marriage is an opportunity for irritation, frustration, annoyance, and pique like no other! You know what I mean when I say that you are often amazed with the situations that arise! Who could believe that deciding where to park, cleaning skills, habits hygienic in nature, or whether or not you buy vs make a lunch could spark so much emotion and debate?
Here is what I think I have experienced when it comes to Joel. Not only are there waaaaaaay more things to disagree about, but there is just a heck of a lot of what I'm going to call "free-floating anger" just, well, floating around. Sometimes there is so much stress and frustration with the situation, so much pain and worry, that it just builds up in the air, like an electrical storm brewing.
Yup, big old electrical storm clouds of anger, just building up in the sky behind you and if you are facing the other way you might not even notice them there, looming up larger and blacker at every moment. And all it takes is one little extra conductive spot and KA-POW! Lightening strikes and things get fried!
I have been completely awe-struck by how very angry I have become and how quickly! At times, I really thought I must be crazy. I mean, it doesn't take much to become a conductor! Leave your rubber boots ON! Danger zone! The lightening is desperate to come to ground, and it's not particular.
Do you know the sort of anger I'm talking about? I mean the sort of anger where at a moments notice you are ready to burn your marriage to the ground and stand on the smouldering pile shouting "Ha! Serves you right!!" Does that sound like I'm a terrible person? Well, truth be told, sometimes I am.
And there have been times where I have been so angry I could have so easily giving in to the urge. And there has been absolutely no justification for that sort of anger. The "I'm out of control destructive even to myself" sort of anger. Where you are absolutely bonkers. You would tear down your own marriage board by board, flinging broken bits around you, scattered and splintered shards underfoot and then stomped off in your bare feet over the mess not even noticing the blood dripping from your soles. That's the kind of insanity I'm talking about. That I have felt. And I better stop now, because my mother in law reads this, and she might be sitting there right now reading this, hands clenched and nails driving into her palms.
I've said enough bad stuff in those times, but I'm glad that I was kept, by God's grace, from saying some of those gasoline igniting or wall smashing things that come to our minds in those moments of crazy. I mean it literally when I say "Thank God!"
And thankfully, those moments don't happen much anymore. I suppose that is due to various things, like getting respite and being able to have some time to tend to marriage-love. Also, respite has lessened our general stress, though we still have flare-ups in the bad times, like hospitalizations.
I suppose as well that as "Anger" is one of those "five stages" of grief that sort of passes. Though as I pointed out with one of my favourite poems, grief is a circular staircase, and we tend to revisit those stages many times over on our way up through it. Still, I think both Steve and I just plain tend to be less angry over it all as we walk this journey.
Keeping closer to God also helps. Turning the anger over to Him and just feeling it disperse. Learning to trust Him with the stress and the worry. And the part I spoke about in an earlier blog, where I talked about surrender as opposed to acceptance. Because even more in this case, it seems that it is surrender that frees me from it all. When you are hurt, you desire vengeance. Yes, there is that part of it in our anger at the pain. We are like injured animals, we want to strike back, even mistaking those who wish to help us by clawing and biting.
And in surrender, I have released that desire to hurt someone, anyone back. I've surrendered. The war is over. Peace may return. I've not learnt it yet. But I'm learning, as I go along. Because the peace inside is a better trade for the anger. And at the end of it all, I want to look at the strong protective walls of my marriage, a safe place for my family to dwell.
Previously I wrote about how I was angry at God, but not ANGRY.
I'm going to write about anger once again, but this time not the anger that might be directed toward God when something like this happens.
I'm going to talk about "marriage anger." I know there are some statistics somewhere about the dismal future prospects for those who lose a child. It's pretty negative. But I'm pretty confident that Steve and I are going to make it. Not because we are either of us so great at marriage. I think over time we have both learnt that we'll never be replacements for Dr. Phil. Well, maybe Dr. Phil is not a good example anyway. Maybe he's more of an example that being human is a state every one of us shares.
In any case, my confidence lies more in the fact that God just has not let us go through all of this. We have just seen His hand, here and there, protecting us and our marriage. I'm not going to get into all that, because this is not about marriage survival, it is about marriage anger. And even the anger part could more than fill a blog, marriage survival can fill several books.
So, I'm just going to say that in my experience one of the huge obstacles thrown up in my marriage due to everything related to Joel has been anger. Any anger, not just that which ends up directed at my husband. But especially that one.
You might think I'm saying I somehow blame Steve for Joel's illness. I'm not saying that. If you are married, then you know that marriage is an opportunity for irritation, frustration, annoyance, and pique like no other! You know what I mean when I say that you are often amazed with the situations that arise! Who could believe that deciding where to park, cleaning skills, habits hygienic in nature, or whether or not you buy vs make a lunch could spark so much emotion and debate?
Here is what I think I have experienced when it comes to Joel. Not only are there waaaaaaay more things to disagree about, but there is just a heck of a lot of what I'm going to call "free-floating anger" just, well, floating around. Sometimes there is so much stress and frustration with the situation, so much pain and worry, that it just builds up in the air, like an electrical storm brewing.
Yup, big old electrical storm clouds of anger, just building up in the sky behind you and if you are facing the other way you might not even notice them there, looming up larger and blacker at every moment. And all it takes is one little extra conductive spot and KA-POW! Lightening strikes and things get fried!
I have been completely awe-struck by how very angry I have become and how quickly! At times, I really thought I must be crazy. I mean, it doesn't take much to become a conductor! Leave your rubber boots ON! Danger zone! The lightening is desperate to come to ground, and it's not particular.
Do you know the sort of anger I'm talking about? I mean the sort of anger where at a moments notice you are ready to burn your marriage to the ground and stand on the smouldering pile shouting "Ha! Serves you right!!" Does that sound like I'm a terrible person? Well, truth be told, sometimes I am.
And there have been times where I have been so angry I could have so easily giving in to the urge. And there has been absolutely no justification for that sort of anger. The "I'm out of control destructive even to myself" sort of anger. Where you are absolutely bonkers. You would tear down your own marriage board by board, flinging broken bits around you, scattered and splintered shards underfoot and then stomped off in your bare feet over the mess not even noticing the blood dripping from your soles. That's the kind of insanity I'm talking about. That I have felt. And I better stop now, because my mother in law reads this, and she might be sitting there right now reading this, hands clenched and nails driving into her palms.
I've said enough bad stuff in those times, but I'm glad that I was kept, by God's grace, from saying some of those gasoline igniting or wall smashing things that come to our minds in those moments of crazy. I mean it literally when I say "Thank God!"
And thankfully, those moments don't happen much anymore. I suppose that is due to various things, like getting respite and being able to have some time to tend to marriage-love. Also, respite has lessened our general stress, though we still have flare-ups in the bad times, like hospitalizations.
I suppose as well that as "Anger" is one of those "five stages" of grief that sort of passes. Though as I pointed out with one of my favourite poems, grief is a circular staircase, and we tend to revisit those stages many times over on our way up through it. Still, I think both Steve and I just plain tend to be less angry over it all as we walk this journey.
Keeping closer to God also helps. Turning the anger over to Him and just feeling it disperse. Learning to trust Him with the stress and the worry. And the part I spoke about in an earlier blog, where I talked about surrender as opposed to acceptance. Because even more in this case, it seems that it is surrender that frees me from it all. When you are hurt, you desire vengeance. Yes, there is that part of it in our anger at the pain. We are like injured animals, we want to strike back, even mistaking those who wish to help us by clawing and biting.
And in surrender, I have released that desire to hurt someone, anyone back. I've surrendered. The war is over. Peace may return. I've not learnt it yet. But I'm learning, as I go along. Because the peace inside is a better trade for the anger. And at the end of it all, I want to look at the strong protective walls of my marriage, a safe place for my family to dwell.
Nursery School and Mother-Guilt
I have been suffering under a load of mother-guilt. You see, last year Caeden went to nursery school and he loved it there. This year I decided not to enroll him. I wasn't too happy about that choice, but there were many reasons for it.
Here is the list:
-Last year we must have lost a couple of months tuition due to Joel's illness and hospitalizations keeping us from getting there.
-Caeden brought home colds which he then passed on, ultimately to Joel.
-While Caeden loves getting up early and going to nursery school, Joel has a much better day if I just let him sleep until he wakes up himself. He sometimes doesn't do so well with being woken up. And he usually sleeps in until about 9, sometimes even 10.
-Joel starts with water via gt at about 7am (which is the earliest I like to disconnect the CPAP, he can't eat and have CPAP at the same time). Then he gets his formula about 8:30 and that runs until 10-10:30. How to make a half hour run to nursery school in there is beyond me, and I hate to make his schedule run any later as Steve already is up until 11:30 waiting for CPAP time with me. Not to mention pushing back the morning feed would likely mean we were not finished with it by 11am, which is when we'd need to get out the door to pick Caeden up.
-The nursery school (the one we could afford) had no elevator. How to get Joel down the stairs and where to put Joel where he'd be safe from the other 19 crazy kids while I got Caeden out of snow suit and signed in? (last year I could carry him down, stroller and all, this year, not so much)
-I never know if Joel is going to end up irritable or in pain, and I hate having him get into a meltdown state before I can get him comfortable.
And that is not mentioning the small details, like how much work it is to get Joel safely into his snowsuit.
If all this explanation sounds like justification, well, it is. Because I feel terrible about it right now. I thought that after the summer, Caeden would not really realize that nursery school had started and he was "missing out." But he has. Oh how he has! He talks about it all the time with a tremor in his voice. He has "rebelled" several times against Sunday School (which he does like) because he is under the mistaken impression that Sunday School has "replaced" nursery school, even though the two are in no way connected.
And there is no way I can really tell him the reason we don't go to nursery school. How can I tell him that we don't go because it is too hard with his brother? I'd rather bear the resentment myself then pass it on to Joel. He can't even defend himself. So I just say that we are not going this year, but we will go next year.
But I'm starting to feel unbearably bad about it all. Can anyone make you feel more guilty or horrible than your own child?
So, I think I'm going to try phoning the nursery school my friend uses. It costs a lot more, but I think it runs an afternoon program. That doesn't make the feeding schedule easier, because then lunch with conflict with it (since Joel takes about 2 hours to eat). But at least I wouldn't have to wake Joel up. And then I'm going to ask if they would consider doing "drop ins" for Caeden, so that we don't have to shell out for a full month when we might only get there a few times. At least the Tuesday afternoons that Melanie is here, it would be easy to get there.
Of course, I don't know if that would really satisfy Caeden. He wouldn't see his friend from the other school, and he still talks about them. But maybe I'd feel better that way. We'll see.
In the meantime, I am very grateful for all my friends who have arranged play dates for Caeden and picked him up to come over to play. Even taken him to the library for story time with their own children. Thanks. It is much appreciated.
Here is the list:
-Last year we must have lost a couple of months tuition due to Joel's illness and hospitalizations keeping us from getting there.
-Caeden brought home colds which he then passed on, ultimately to Joel.
-While Caeden loves getting up early and going to nursery school, Joel has a much better day if I just let him sleep until he wakes up himself. He sometimes doesn't do so well with being woken up. And he usually sleeps in until about 9, sometimes even 10.
-Joel starts with water via gt at about 7am (which is the earliest I like to disconnect the CPAP, he can't eat and have CPAP at the same time). Then he gets his formula about 8:30 and that runs until 10-10:30. How to make a half hour run to nursery school in there is beyond me, and I hate to make his schedule run any later as Steve already is up until 11:30 waiting for CPAP time with me. Not to mention pushing back the morning feed would likely mean we were not finished with it by 11am, which is when we'd need to get out the door to pick Caeden up.
-The nursery school (the one we could afford) had no elevator. How to get Joel down the stairs and where to put Joel where he'd be safe from the other 19 crazy kids while I got Caeden out of snow suit and signed in? (last year I could carry him down, stroller and all, this year, not so much)
-I never know if Joel is going to end up irritable or in pain, and I hate having him get into a meltdown state before I can get him comfortable.
And that is not mentioning the small details, like how much work it is to get Joel safely into his snowsuit.
If all this explanation sounds like justification, well, it is. Because I feel terrible about it right now. I thought that after the summer, Caeden would not really realize that nursery school had started and he was "missing out." But he has. Oh how he has! He talks about it all the time with a tremor in his voice. He has "rebelled" several times against Sunday School (which he does like) because he is under the mistaken impression that Sunday School has "replaced" nursery school, even though the two are in no way connected.
And there is no way I can really tell him the reason we don't go to nursery school. How can I tell him that we don't go because it is too hard with his brother? I'd rather bear the resentment myself then pass it on to Joel. He can't even defend himself. So I just say that we are not going this year, but we will go next year.
But I'm starting to feel unbearably bad about it all. Can anyone make you feel more guilty or horrible than your own child?
So, I think I'm going to try phoning the nursery school my friend uses. It costs a lot more, but I think it runs an afternoon program. That doesn't make the feeding schedule easier, because then lunch with conflict with it (since Joel takes about 2 hours to eat). But at least I wouldn't have to wake Joel up. And then I'm going to ask if they would consider doing "drop ins" for Caeden, so that we don't have to shell out for a full month when we might only get there a few times. At least the Tuesday afternoons that Melanie is here, it would be easy to get there.
Of course, I don't know if that would really satisfy Caeden. He wouldn't see his friend from the other school, and he still talks about them. But maybe I'd feel better that way. We'll see.
In the meantime, I am very grateful for all my friends who have arranged play dates for Caeden and picked him up to come over to play. Even taken him to the library for story time with their own children. Thanks. It is much appreciated.
Saturday, November 20, 2010
Anger: Part One
Several times since we had our diagnosis, people expressed surprise that I (Steve too, but I'd let him speak for himself on this one) was not angry at God.
Anger as related to loss or grief is not a subject to treat quickly or lightly. It's one of the five "stages" of grief and it's a huge, huge thing. So even starting off, I titled this Part One. Pretty sure I'll not get it all in one blog. But I've wanted to say something about it for a long, long time. Like since I first started this blog, last December. And as time went on, I think I just found more and more to say.
So, yes, I have been angry at God, but I haven't been ANGRY at God. Hard to explain the difference exactly. So I'll use an example. Sometimes I get angry at my husband. (yeah, can you believe that, a wife getting angry at her husband.) There are sort of two "types" of anger here, though it's sort of a inexact way to sort it, as anger is not an exact science, eh?
Sometimes when I'm angry at Steve, I have what I feel are justified feelings of anger. The sort of anger when it's pretty clear that Steve has wronged me. The sort of anger that doesn't really dissipate over time. The kind where we clearly need a discussion to clear the air, one where I hope he's going to apologize, and if he doesn't, there's going to be a bit of work on my side to "get over" it and move on. You know, (just throwing out some examples, not saying Steve has done these ones) the sort of thing where you caught your spouse in a lie, where they said something extremely hurtful, or spent $300 dollars on something you had both agreed you didn't need and wouldn't buy. That sort of anger about that sort of thing.
Then there are the other times I'm angry. Hey, I always have a "reason" but it's just honestly not always a very good one and I sometimes can recognize this even in my moment of anger. Like if Steve forgets to pick up something I asked him too. A totally "honest" mistake, but I might for some reason inexplicable to me, get really annoyed. Like the example I have given before of stubbing my toe and then being angry at Steve for not responding to that "properly" even though I know inside "Hey, what way WOULD be the proper way??"
These moments of anger insanity on my part are usually the result of me being frustrated or hurt, without there being any real target for my anger. Steve is there, and he is my husband, making him illogically the best candidate to elect as the recipient of my negative feelings. (seriously, poor guy!) We've all done this. It's the sort of "bad day" scenario where those who love you tip toe around you or avoid you because they know you are just looking for a target. No?? Is this not sometimes true of you? Because it sure as heck can be true of me.
The thing with these second types of anger situations is that most of the time as my frustration or pain dissipates, so does the insanity and my anger evaporates quite quickly. In fact, in most of these situations, if you give me about 5 or 10 minutes, I've come to my senses, as most likely I even knew I was being "crazy" while I felt the anger anyway. I know I'm not "justified" to feel so angry, and so most of the time a voice of reason is whispering "Hey, crazy lady, don't shoot anybody here, because later on your going to see that it was a mistake on your part and your going to regret it greatly if anyone gets hurt in this moment." Most of the time. ;)
And I sure have been angry at God, but it has been the second type of anger. I've been lashing out at Him because I've been in so much pain, and who else could I target or make responsible? Even though I don't think God "caused" this in the usual sense of things, the fact remains that I know He could STOP it at any time. I know the power lies with Him to at any time miraculously cure Joel.
It's a response of emotions and not sense, though. I mean, I can clearly understand in my mind and heart why God allows this. Even though I sometimes question why Joel has to suffer in the smaller details of things, in the larger picture I get it. If you have read all my blogs along the way, you can see this. So many of them hold a piece of that puzzle, from where I've written about acceptance, to the places I've written about how Joel is even a special sort of gift, from how I feel Joel has taught me so much, to how I know that in the long run Joel has had a wonderful and happy life, specially compared to what some children have, to the fact that I know death is not the end. The pieces to my mental reaction, the reaction of my better sense, and even the reaction of my heart in the better times, the pieces of that puzzle I have already give you in my other blogs. You can put it all together for yourself.
The times of my anger are the times when the insanity of pain strikes me. Like the woman in labour who snapped at her husband "You got me into this!!" So it has been with my anger at God. It's the middle of the night, my boy is crying, I'm tired and my every heartbeat is piercing me is the sort of anger I have felt until the labour pain passes and reason returns to me. It's normal and natural to be blinded by the insanity of pain from time to time. Especially in the middle of the night.
But I have never found myself angry in the morning. The clear light of day sees it dissipate like the mist. I don't like what I'm going through. As I've said many, many times, I would NEVER choose this for myself or for my child. The fact that it is happening without my consent or permission could make me very angry, I guess, but long, long ago I gave my life to a greater power. I told God long ago that I was surrendering my desire for control (because a lot of control is an illusion anyway, so surrendering my desire for it is more logical than saying I surrender control) and that I was trusting Him with my very life. I found myself able to do this in complete trust, because I knew that God had paid with His own life in order to deal with the evil in my own. I have never, ever regretted that decision, not even with all that has happened with Joel.
And so yes, I have been angry at God, but I have never been ANGRY at God. We have had words and mine were not always innocent or kind. Or reasonable. That's ok. He always forgives me, because He knows my weakness and He "remembers that I'm made of dust" (that's from a favorite Psalm, 103). And when my pain is stilled for a moment, reason returns to me. Then He holds me close, and joy returns.
Anger as related to loss or grief is not a subject to treat quickly or lightly. It's one of the five "stages" of grief and it's a huge, huge thing. So even starting off, I titled this Part One. Pretty sure I'll not get it all in one blog. But I've wanted to say something about it for a long, long time. Like since I first started this blog, last December. And as time went on, I think I just found more and more to say.
So, yes, I have been angry at God, but I haven't been ANGRY at God. Hard to explain the difference exactly. So I'll use an example. Sometimes I get angry at my husband. (yeah, can you believe that, a wife getting angry at her husband.) There are sort of two "types" of anger here, though it's sort of a inexact way to sort it, as anger is not an exact science, eh?
Sometimes when I'm angry at Steve, I have what I feel are justified feelings of anger. The sort of anger when it's pretty clear that Steve has wronged me. The sort of anger that doesn't really dissipate over time. The kind where we clearly need a discussion to clear the air, one where I hope he's going to apologize, and if he doesn't, there's going to be a bit of work on my side to "get over" it and move on. You know, (just throwing out some examples, not saying Steve has done these ones) the sort of thing where you caught your spouse in a lie, where they said something extremely hurtful, or spent $300 dollars on something you had both agreed you didn't need and wouldn't buy. That sort of anger about that sort of thing.
Then there are the other times I'm angry. Hey, I always have a "reason" but it's just honestly not always a very good one and I sometimes can recognize this even in my moment of anger. Like if Steve forgets to pick up something I asked him too. A totally "honest" mistake, but I might for some reason inexplicable to me, get really annoyed. Like the example I have given before of stubbing my toe and then being angry at Steve for not responding to that "properly" even though I know inside "Hey, what way WOULD be the proper way??"
These moments of anger insanity on my part are usually the result of me being frustrated or hurt, without there being any real target for my anger. Steve is there, and he is my husband, making him illogically the best candidate to elect as the recipient of my negative feelings. (seriously, poor guy!) We've all done this. It's the sort of "bad day" scenario where those who love you tip toe around you or avoid you because they know you are just looking for a target. No?? Is this not sometimes true of you? Because it sure as heck can be true of me.
The thing with these second types of anger situations is that most of the time as my frustration or pain dissipates, so does the insanity and my anger evaporates quite quickly. In fact, in most of these situations, if you give me about 5 or 10 minutes, I've come to my senses, as most likely I even knew I was being "crazy" while I felt the anger anyway. I know I'm not "justified" to feel so angry, and so most of the time a voice of reason is whispering "Hey, crazy lady, don't shoot anybody here, because later on your going to see that it was a mistake on your part and your going to regret it greatly if anyone gets hurt in this moment." Most of the time. ;)
And I sure have been angry at God, but it has been the second type of anger. I've been lashing out at Him because I've been in so much pain, and who else could I target or make responsible? Even though I don't think God "caused" this in the usual sense of things, the fact remains that I know He could STOP it at any time. I know the power lies with Him to at any time miraculously cure Joel.
It's a response of emotions and not sense, though. I mean, I can clearly understand in my mind and heart why God allows this. Even though I sometimes question why Joel has to suffer in the smaller details of things, in the larger picture I get it. If you have read all my blogs along the way, you can see this. So many of them hold a piece of that puzzle, from where I've written about acceptance, to the places I've written about how Joel is even a special sort of gift, from how I feel Joel has taught me so much, to how I know that in the long run Joel has had a wonderful and happy life, specially compared to what some children have, to the fact that I know death is not the end. The pieces to my mental reaction, the reaction of my better sense, and even the reaction of my heart in the better times, the pieces of that puzzle I have already give you in my other blogs. You can put it all together for yourself.
The times of my anger are the times when the insanity of pain strikes me. Like the woman in labour who snapped at her husband "You got me into this!!" So it has been with my anger at God. It's the middle of the night, my boy is crying, I'm tired and my every heartbeat is piercing me is the sort of anger I have felt until the labour pain passes and reason returns to me. It's normal and natural to be blinded by the insanity of pain from time to time. Especially in the middle of the night.
But I have never found myself angry in the morning. The clear light of day sees it dissipate like the mist. I don't like what I'm going through. As I've said many, many times, I would NEVER choose this for myself or for my child. The fact that it is happening without my consent or permission could make me very angry, I guess, but long, long ago I gave my life to a greater power. I told God long ago that I was surrendering my desire for control (because a lot of control is an illusion anyway, so surrendering my desire for it is more logical than saying I surrender control) and that I was trusting Him with my very life. I found myself able to do this in complete trust, because I knew that God had paid with His own life in order to deal with the evil in my own. I have never, ever regretted that decision, not even with all that has happened with Joel.
And so yes, I have been angry at God, but I have never been ANGRY at God. We have had words and mine were not always innocent or kind. Or reasonable. That's ok. He always forgives me, because He knows my weakness and He "remembers that I'm made of dust" (that's from a favorite Psalm, 103). And when my pain is stilled for a moment, reason returns to me. Then He holds me close, and joy returns.
Friday, November 19, 2010
Appointments and other things.
Ok, it's really about time I wrote in here. It's not that I haven't had thoughts, I have. Just more that I haven't been sure that those thoughts would be of interest to anyone else. Particularly as they were only very slightly Joel-related, or else they were Joel related, but sounded more like complaining than anything else.
Here is an update on things. First of all, the appointments on Monday all worked out ok. The neurologist and the feeding clinic were great and very necessary for us. When it comes to seizures, the neuro and I sort of worked out an understanding. She knows I'd like to be more aggressive in treating them, as I think they might be undermining some of Joel's quality of life. She's going to try to do that, but also will still be cautious because really, the only reason we want to control Joel's seizures is to make him happier, and we are trying to balance that with side effects from meds. If we improve his life when it comes to less seizures, but make him more unhappy due to side effects, we haven't accomplished our goal, which is just to make him happy.
And we got a new and smaller GT and it's not leaking nearly as much, so maybe we can start to gain a little weight.
Funny thing: a day or two after the appointments, I got a notice for ANOTHER appointment, on Dec. 22nd!! This one was the heart clinic, doing a follow up because when Joel was in for diagnosis, one of the tests they did was to check out his heart. Good grief! Seems like everyone wants to see us before Christmas! So I gave them a call. We already know that Joel's heart is ok. It's the least of our worries! And the heart work up takes from 2 to 3 HOURS. Which would be very unpleasant for us both. They still have to get back to me, but they better say I don't have to go. Because we are NOT going. ;)
I also managed to cancel the appointment for the metabolic doctor and he'll call me if he has any questions. So that was great. The endocrinologist appointment from Monday was rescheduled. I didn't love that, but what can you do? :( At this point I suppose we have to go in.
Symptom Management and Palliative Care came to our house for an appointment. I can't tell you how nice that was. Joel was in a happy mood, though not especially playful, he did have some nice smiles and babbling to show the doctor and nurse. I love that, because I don't think anyone ever gets to see that side of Joel in a regular appointment, even when he's well. The appointments tend to be in the morning and he's usually still very sleepy and of course, hanging out at the doctors just doesn't bring out the bubbly happiness. In me either!!!
Anyway, I didn't put on any make up and I drank my coffee while we chatted. It was just so nice to be in an atmosphere where we could feel more relaxed and more free. I said stuff I never say in the hospital, because there I'm always trying to be "professional" and also I don't want anyone else to hear if I say something negative. I know the palliative care doctors would keep a confidence, but a hospital is no place to be anything less that tactful and diplomatic. It was nice to feel less "on guard" and get to say what was on my mind without having to be so careful all the time.
Plus, I love those people, they are so warm, caring, and understanding. I guess you don't go into care of dying children if you don't have these qualities. I'm guessing that you gotta have a large place in your heart for this if you are going to do it on a day to day basis. And it would be impossible for me not to love anyone who likes or cares for Joel. It's pretty much a shoo-in to my affections!
And they are the doctors I feel the most respect from. I see all sorts of attitudes toward what I say, from skepticism and annoyance and impatience, to attentive listening, and then there are doctors who really listen and consider what you say, and even value it. It's nice to really feel respect from doctors.
They seem better able to see and understand how much quality of life we experience with Joel and in Joel, and they seem better able to understand that with how much we love Joel, we will do our best to keep it as long as we can, and then let him go when we know it's time. It is so great to have doctors that can see that, as sometimes I feel like some of the other doctors we've met have been "secretly" thinking that Joel has no reason to live, but we just can't let go. We really are not that selfish. We wouldn't try to keep him so hard if we didn't know that he also enjoyed his life very much, even with being sick or irritable from time to time.
And getting respect and understanding from the medical people you are working with is priceless.
Because sometimes I want to cry out about how HARD this is. How it is really, really hard, every single day it's hard, even on the good days I'm dealing with it all. Then I'd just sound whiny, and maybe I am whiny at times. I know that it is impossible for anyone to really know how hard it can get. And I think that what people often see is sometimes the only thing I can show them: me smiley and things good and no tears for us. I wish I could really have a good sob sometimes, and let it out more with my good friends, but as I have written before, I can't seem to unlock the chest of grief at the right time.
And there is a lot of happiness still. That is the thing, there is still so much happiness and it's hard to know if anyone can see how hard it is underneath all the happiness. I'm really not being "fake" or putting it on all the time. There is just truly lots of happiness in my life and with Joel, that happiness is like a lovely mist which wells up and conceals the hard and rocky ground I have to walk on underneath it. The mist is so pretty and soft, it's hard to see how the rocks hurt my bare feet.
Which is one reason I write this blog. Not because I want everyone to say "Poor Karen, how hard it is for her!" But because I want my friends to really know me, to be honest and all that other stuff. It helps me to weep and wail a little and get some of the heavy, massive sadness out of me. Plus I hope that the "next" time they have a person in their lives with a heartache, it will give them a tool to come along side that person.
I am so grateful when I can get along side someone else who is hurting and listen and care for them. I suppose that sounds like a terrible thing to be grateful for! But it is truly a gift to me. It takes me out of my own self, and thinking how hard it is for me! I get to think about how hard it is for someone else, and that is a blessing. I hope it is a blessing for them too, and when it does seem to help them, it's an even bigger blessing for me, to know I could use my own pain or sorrow to help someone else with theirs.
Ok, I've really gone on here, it reminds me of what my university profs used to call "stream of consciousness" writing. Yeah, don't get me started on that one, Virginia Wolf! So, sorry. It's all loosely connected in some way, really.
Here is an update on things. First of all, the appointments on Monday all worked out ok. The neurologist and the feeding clinic were great and very necessary for us. When it comes to seizures, the neuro and I sort of worked out an understanding. She knows I'd like to be more aggressive in treating them, as I think they might be undermining some of Joel's quality of life. She's going to try to do that, but also will still be cautious because really, the only reason we want to control Joel's seizures is to make him happier, and we are trying to balance that with side effects from meds. If we improve his life when it comes to less seizures, but make him more unhappy due to side effects, we haven't accomplished our goal, which is just to make him happy.
And we got a new and smaller GT and it's not leaking nearly as much, so maybe we can start to gain a little weight.
Funny thing: a day or two after the appointments, I got a notice for ANOTHER appointment, on Dec. 22nd!! This one was the heart clinic, doing a follow up because when Joel was in for diagnosis, one of the tests they did was to check out his heart. Good grief! Seems like everyone wants to see us before Christmas! So I gave them a call. We already know that Joel's heart is ok. It's the least of our worries! And the heart work up takes from 2 to 3 HOURS. Which would be very unpleasant for us both. They still have to get back to me, but they better say I don't have to go. Because we are NOT going. ;)
I also managed to cancel the appointment for the metabolic doctor and he'll call me if he has any questions. So that was great. The endocrinologist appointment from Monday was rescheduled. I didn't love that, but what can you do? :( At this point I suppose we have to go in.
Symptom Management and Palliative Care came to our house for an appointment. I can't tell you how nice that was. Joel was in a happy mood, though not especially playful, he did have some nice smiles and babbling to show the doctor and nurse. I love that, because I don't think anyone ever gets to see that side of Joel in a regular appointment, even when he's well. The appointments tend to be in the morning and he's usually still very sleepy and of course, hanging out at the doctors just doesn't bring out the bubbly happiness. In me either!!!
Anyway, I didn't put on any make up and I drank my coffee while we chatted. It was just so nice to be in an atmosphere where we could feel more relaxed and more free. I said stuff I never say in the hospital, because there I'm always trying to be "professional" and also I don't want anyone else to hear if I say something negative. I know the palliative care doctors would keep a confidence, but a hospital is no place to be anything less that tactful and diplomatic. It was nice to feel less "on guard" and get to say what was on my mind without having to be so careful all the time.
Plus, I love those people, they are so warm, caring, and understanding. I guess you don't go into care of dying children if you don't have these qualities. I'm guessing that you gotta have a large place in your heart for this if you are going to do it on a day to day basis. And it would be impossible for me not to love anyone who likes or cares for Joel. It's pretty much a shoo-in to my affections!
And they are the doctors I feel the most respect from. I see all sorts of attitudes toward what I say, from skepticism and annoyance and impatience, to attentive listening, and then there are doctors who really listen and consider what you say, and even value it. It's nice to really feel respect from doctors.
They seem better able to see and understand how much quality of life we experience with Joel and in Joel, and they seem better able to understand that with how much we love Joel, we will do our best to keep it as long as we can, and then let him go when we know it's time. It is so great to have doctors that can see that, as sometimes I feel like some of the other doctors we've met have been "secretly" thinking that Joel has no reason to live, but we just can't let go. We really are not that selfish. We wouldn't try to keep him so hard if we didn't know that he also enjoyed his life very much, even with being sick or irritable from time to time.
And getting respect and understanding from the medical people you are working with is priceless.
Because sometimes I want to cry out about how HARD this is. How it is really, really hard, every single day it's hard, even on the good days I'm dealing with it all. Then I'd just sound whiny, and maybe I am whiny at times. I know that it is impossible for anyone to really know how hard it can get. And I think that what people often see is sometimes the only thing I can show them: me smiley and things good and no tears for us. I wish I could really have a good sob sometimes, and let it out more with my good friends, but as I have written before, I can't seem to unlock the chest of grief at the right time.
And there is a lot of happiness still. That is the thing, there is still so much happiness and it's hard to know if anyone can see how hard it is underneath all the happiness. I'm really not being "fake" or putting it on all the time. There is just truly lots of happiness in my life and with Joel, that happiness is like a lovely mist which wells up and conceals the hard and rocky ground I have to walk on underneath it. The mist is so pretty and soft, it's hard to see how the rocks hurt my bare feet.
Which is one reason I write this blog. Not because I want everyone to say "Poor Karen, how hard it is for her!" But because I want my friends to really know me, to be honest and all that other stuff. It helps me to weep and wail a little and get some of the heavy, massive sadness out of me. Plus I hope that the "next" time they have a person in their lives with a heartache, it will give them a tool to come along side that person.
I am so grateful when I can get along side someone else who is hurting and listen and care for them. I suppose that sounds like a terrible thing to be grateful for! But it is truly a gift to me. It takes me out of my own self, and thinking how hard it is for me! I get to think about how hard it is for someone else, and that is a blessing. I hope it is a blessing for them too, and when it does seem to help them, it's an even bigger blessing for me, to know I could use my own pain or sorrow to help someone else with theirs.
Ok, I've really gone on here, it reminds me of what my university profs used to call "stream of consciousness" writing. Yeah, don't get me started on that one, Virginia Wolf! So, sorry. It's all loosely connected in some way, really.
Tuesday, November 16, 2010
Bent
Last week I took Caeden out to the mall for our respite and we bought a lovely new jacket and snow pants. We took the bus to get there, which was so much fun for Caeden that he asked me in the cutest, most earnest voice, if we could live on the bus, because the bus was so coo-owl. We also saw a lady who had something medical "wrong" with her, and her hand on the bar next to mine caught my eye. It was extremely malformed. The thumb was bent at a strange angle and some of her fingers were not really very "finger-like" at all.
And I thought about how wonderful it would be if I could just reach over and touch her and her hand would miraculously grow straight and beautiful. All her fingers would work the way they should, flexing and straightening, grasping and releasing. She'd be able to pick up tiny objects between her thumb and forefinger. All that amazing hand stuff that we take for granted.
How terrific would it be, if I could not only make her hand whole, but if every person I came across, I could touch any of them with an illness or deformity and make them well and whole. Suddenly, I really just couldn't think of any more joyful work then that.
Of course, that made me think of Jesus, and how He basically did just that. As He went on His ministry, He healed anyone He came across who was broken in some way. There are no accounts of anyone in the Bible He refused to make whole. That made me think of the healing coming one day, a healing for nature itself, and how everything bent would be made straight. Everything and everyone, whole again.
But perhaps the most precious of all, how the internal "bent" part of us would be straightened one day for good. Because we are all bent inside. Deformed. Crooked. Not whole.
Last Sunday Steve stayed home with Joel and I went to church. And when I came back, nothing had been done in the house. By which I mean that dirty dishes sat on the table and the dishwasher was not loaded or put through, etc. etc. Steve told me that Joel was happy at first, but then became irritable and then he had held him the whole time I was gone.
I confess that my first thought was that Steve had likely procrastinated when it came to cleaning up. He probably thought he had lots of time to do it, instead of doing it right away, and now I had to clean up the whole mess quickly before our respite worker arrived and we went out.
Then a little voice piped up "Even if Steve did put it off, haven't you put things off until later too, and then been interrupted by Joel? Wasn't supper late once this week partly for that reason?" Oh sure, I continued to grumble, but I don't do that very much. Just now and then. But that little voice wouldn't stop. So I stopped for a minute and thought about it.
And after truly thinking it through for awhile and a bit of soul searching honesty, I concluded that it would be more likely that 50% of the time I do what I need to right away and 50% of the time I wait until I have just enough time. Of course, half of those 50% days, Joel is good and lets me get things done even if I wait until the last minute. So it would appear as if only 25% of the time I were procrastinating. That is only because I'm not caught out.
You see, I'm bent inside. Yup. I'm bent. Like an arrow. I used to do some archery at camp. If you have a bent arrow, let's just say you do have a good reason not to hit your target. You can't get very far firing a bent arrow.
And so with me. I have these flaws. That is a kind way to say that an ugly and base sort of evil exists in my nature. I'm self-ish. I'm self-centred. I'm ego-centric. I'm self-absorbed. Getting the picture? And I often do things that harm other people because of this horrible bend.
But it's like trying to see yourself in a wavy mirror. You can't get the real picture. Because I'm looking through my bent nature. And the bend is about me, me, me! So I say "I would never do that," because I can't see myself properly through the mirror of thinking that I am the universe. I so often can't see what is wrong with myself, because I'M the one looking. If you are bent, how can you see straight?
In rare moments of honesty, particularly when speaking with God, the truth is pointed out to me. Now, don't any of you write me nice comments saying how I'm really not that bad, how it's only natural and it's only human. I know you'd be trying to make me feel better. But it would sort of be like trying to treat cancer with a nice Elmo band-aid and saying "It's not that bad." It's just better to be honest about these things. Nothing gets fixed by denial. Trust me, I know.
And I'm sorry, but I have heard of the Holocaust, and Darfur, and Rwanda, and Bosnia and I'm only getting started, so if you tell me it's "just human nature" to be selfish and egocentric I can tell you I find NOTHING comforting in it, realizing just what we are "naturally" capable of. You might say I take a dim view of human nature.
You might think I'm exaggerating by placing myself anywhere near the category of the above events. If so, you don't know me as well as I know me. Lately I've seen some pretty ugly things in my heart. Sure, they are natural. And ugly as sin. Did I use the "s" word? Well, maybe take out the "as" and the sentence is more correct. I do believe in Evil, capital "E" and in the last weeks I have seen the enemy and it is me!
I'm not depressed by this, though I have felt ashamed at times. You see, without seeing this ugliness and acknowledging, I can't have hope of a cure. If you deny you have cancer, you won't get treatment and then there might be no hope for you. I have cancer of the soul, but I have a very good doctor. The Great Physician, some call Him.
Which is what the real message of Christmas is about. A peace child. God making a way for us to truly deal with the evil that is our nature. To face it square on, see how ugly it really is. And then be forgiven.
I don't know about you, but there are times when I have been forgive by people, and then there are times when I've been excused. I'm grateful when they excuse my behavior, because I like them to think I'm better than I acted. But there is still an uncomfortable level of guilt and discomfort, because deep inside I realize that I'm NOT better than I acted.
Forgiveness, that is really something else. Because even though I'm still a screw up, even though sometimes my action show that I can be ugly, they are still going to love me anyway. And that is a wonderful thing. I don't have to worry they'll find out the truth. They know the truth and they still love me.
And this Christmas the message has been singing so loudly to me, even amidst all the sorrow and grief I have been feeling. Even though I have seen some uglies rearing their head. I'm not proud of them.
I'm forgiven, though. Truly forgiven, and not excused. God knows how much evil there really is in my nature, but He's made a way for me to be forgiven. And for what is bent to become straight. Because the more I'm honest with Him, truly honest, so I can ask for His forgiveness and help, the straighter I become.
And one day there will be full healing. Healing of the body, yes, as I hope for Joel. But healing of the soul too. This ugly evil nature will be healed completely, not just in part. A day of healing is coming for both Joel and for me. And the thought of the healing, both kinds, makes my heart sing.
And I thought about how wonderful it would be if I could just reach over and touch her and her hand would miraculously grow straight and beautiful. All her fingers would work the way they should, flexing and straightening, grasping and releasing. She'd be able to pick up tiny objects between her thumb and forefinger. All that amazing hand stuff that we take for granted.
How terrific would it be, if I could not only make her hand whole, but if every person I came across, I could touch any of them with an illness or deformity and make them well and whole. Suddenly, I really just couldn't think of any more joyful work then that.
Of course, that made me think of Jesus, and how He basically did just that. As He went on His ministry, He healed anyone He came across who was broken in some way. There are no accounts of anyone in the Bible He refused to make whole. That made me think of the healing coming one day, a healing for nature itself, and how everything bent would be made straight. Everything and everyone, whole again.
But perhaps the most precious of all, how the internal "bent" part of us would be straightened one day for good. Because we are all bent inside. Deformed. Crooked. Not whole.
Last Sunday Steve stayed home with Joel and I went to church. And when I came back, nothing had been done in the house. By which I mean that dirty dishes sat on the table and the dishwasher was not loaded or put through, etc. etc. Steve told me that Joel was happy at first, but then became irritable and then he had held him the whole time I was gone.
I confess that my first thought was that Steve had likely procrastinated when it came to cleaning up. He probably thought he had lots of time to do it, instead of doing it right away, and now I had to clean up the whole mess quickly before our respite worker arrived and we went out.
Then a little voice piped up "Even if Steve did put it off, haven't you put things off until later too, and then been interrupted by Joel? Wasn't supper late once this week partly for that reason?" Oh sure, I continued to grumble, but I don't do that very much. Just now and then. But that little voice wouldn't stop. So I stopped for a minute and thought about it.
And after truly thinking it through for awhile and a bit of soul searching honesty, I concluded that it would be more likely that 50% of the time I do what I need to right away and 50% of the time I wait until I have just enough time. Of course, half of those 50% days, Joel is good and lets me get things done even if I wait until the last minute. So it would appear as if only 25% of the time I were procrastinating. That is only because I'm not caught out.
You see, I'm bent inside. Yup. I'm bent. Like an arrow. I used to do some archery at camp. If you have a bent arrow, let's just say you do have a good reason not to hit your target. You can't get very far firing a bent arrow.
And so with me. I have these flaws. That is a kind way to say that an ugly and base sort of evil exists in my nature. I'm self-ish. I'm self-centred. I'm ego-centric. I'm self-absorbed. Getting the picture? And I often do things that harm other people because of this horrible bend.
But it's like trying to see yourself in a wavy mirror. You can't get the real picture. Because I'm looking through my bent nature. And the bend is about me, me, me! So I say "I would never do that," because I can't see myself properly through the mirror of thinking that I am the universe. I so often can't see what is wrong with myself, because I'M the one looking. If you are bent, how can you see straight?
In rare moments of honesty, particularly when speaking with God, the truth is pointed out to me. Now, don't any of you write me nice comments saying how I'm really not that bad, how it's only natural and it's only human. I know you'd be trying to make me feel better. But it would sort of be like trying to treat cancer with a nice Elmo band-aid and saying "It's not that bad." It's just better to be honest about these things. Nothing gets fixed by denial. Trust me, I know.
And I'm sorry, but I have heard of the Holocaust, and Darfur, and Rwanda, and Bosnia and I'm only getting started, so if you tell me it's "just human nature" to be selfish and egocentric I can tell you I find NOTHING comforting in it, realizing just what we are "naturally" capable of. You might say I take a dim view of human nature.
You might think I'm exaggerating by placing myself anywhere near the category of the above events. If so, you don't know me as well as I know me. Lately I've seen some pretty ugly things in my heart. Sure, they are natural. And ugly as sin. Did I use the "s" word? Well, maybe take out the "as" and the sentence is more correct. I do believe in Evil, capital "E" and in the last weeks I have seen the enemy and it is me!
I'm not depressed by this, though I have felt ashamed at times. You see, without seeing this ugliness and acknowledging, I can't have hope of a cure. If you deny you have cancer, you won't get treatment and then there might be no hope for you. I have cancer of the soul, but I have a very good doctor. The Great Physician, some call Him.
Which is what the real message of Christmas is about. A peace child. God making a way for us to truly deal with the evil that is our nature. To face it square on, see how ugly it really is. And then be forgiven.
I don't know about you, but there are times when I have been forgive by people, and then there are times when I've been excused. I'm grateful when they excuse my behavior, because I like them to think I'm better than I acted. But there is still an uncomfortable level of guilt and discomfort, because deep inside I realize that I'm NOT better than I acted.
Forgiveness, that is really something else. Because even though I'm still a screw up, even though sometimes my action show that I can be ugly, they are still going to love me anyway. And that is a wonderful thing. I don't have to worry they'll find out the truth. They know the truth and they still love me.
And this Christmas the message has been singing so loudly to me, even amidst all the sorrow and grief I have been feeling. Even though I have seen some uglies rearing their head. I'm not proud of them.
I'm forgiven, though. Truly forgiven, and not excused. God knows how much evil there really is in my nature, but He's made a way for me to be forgiven. And for what is bent to become straight. Because the more I'm honest with Him, truly honest, so I can ask for His forgiveness and help, the straighter I become.
And one day there will be full healing. Healing of the body, yes, as I hope for Joel. But healing of the soul too. This ugly evil nature will be healed completely, not just in part. A day of healing is coming for both Joel and for me. And the thought of the healing, both kinds, makes my heart sing.
Friday, November 12, 2010
Appointments! Nix! Nix!!
Appointments drive me crazy. I mean, they are really starting to drive me nuts. I cancel as many of them as I feel I can, because I can't help but feel that they are, for the most part, useless.
I mean, I won't ever cancel an audiologist appointment. That has a definite purpose, to check Joel's hearing, and if he needs hearing aids that will bring him a big improvement in his quality of life. I'm going in to his neurologist, because I have some questions and discussion that will just be better "in person" instead of trying to do it all on the phone. What I hate about that appointment is that I have to bring Joel to it. That part is pretty pointless. Unlikely that she'll actually see any of the stuff I'm talking about in the small half an hour window we are there. Still, I gotta dress him up and haul him out there, interrupting feeding schedules and causing him the misery of car seat and snow suit and all.
I'm developing a bad attitude about it all. Today the endocrinologist's office called to try and change Joel's appointment to 1pm from 11:30. Thing is, I managed to get two appointments in one day. Neurology at 8:50 and then the endo appointment. At least there are two in one day so it's one trip, though we'll have a two hour wait between appointments and I'll have to bring along his noon meal and feed it to him while we wait between appointments. But 1pm??? AAAAAGH. Seriously, now we are supposed to hang around for three and a half hours??? Or go home and then come back later?? This feels nuts, I feel nuts!!! I am so, so, so tired of appointments, appointments, appointments and for what?? Ask a few questions, let Joel get prodded, agree that everything is same-same and then go home.
So I wasn't too crazy about the time change and the receptionist is going to get back to me. If she tells me that 1pm is the only slot, I'm NOT GOING IN FOR IT! Seriously, the answer is NO. Just phone me at home and ask your questions.
I have an appointment with the metabolic doctor not quite two weeks from now. Know what? I'm thinking of cancelling that one too. Frustrating thing is, the ONE TIME I REALLY WANT to see him is when we are in the hospital. That's when he could help me out by discussing with me how Joel's PBD could be affecting the situation/treatment/symptoms, etc, etc. But he doesn't show up then because he's too busy and he knows other docs are "taking care" of the situation. Well guess what? I'm TOO BUSY just surviving to come into another appointment where we just chat about how things are going and I am ONCE AGAIN asked if I have enough respite/support.
This is what me POCIC's are talking about when we say "THE SYSTEM." (How do you like the acronym? Parents of Chronically Ill Children.) The fact that we are supposed to keep a plethora of appointments the large percentage of which do not really assists us, other than making sure we can still recognize the doctor's face is just one of those things that drive us (or maybe it's just me!) stark raving bonkers. The fact that "the system" keeps my doctors too busy to come in and see us when we really need them, which is when we are in hospital. And when everything is going well, when I really just want to enjoy the good times we are having, THEN they want me to come in and see them.
Just a little rant, to get it out of my system. As time goes on, appointments get more and more crazy-making. Because when we are well, we DON'T want to see the hospital or doctors. Because as time goes on, it (time) also becomes more and more valuable. Because as Joel gets worse, appointments are harder and harder to keep.
So, to try and end on a more positive note, let me tell you that the palliative care team will come into my home for a home visit. The doctors or nurse will come in to my home if there is any problem or concern with Joel. Pretty wonderfully old fashioned. And such a huge relief.
I mean, I won't ever cancel an audiologist appointment. That has a definite purpose, to check Joel's hearing, and if he needs hearing aids that will bring him a big improvement in his quality of life. I'm going in to his neurologist, because I have some questions and discussion that will just be better "in person" instead of trying to do it all on the phone. What I hate about that appointment is that I have to bring Joel to it. That part is pretty pointless. Unlikely that she'll actually see any of the stuff I'm talking about in the small half an hour window we are there. Still, I gotta dress him up and haul him out there, interrupting feeding schedules and causing him the misery of car seat and snow suit and all.
I'm developing a bad attitude about it all. Today the endocrinologist's office called to try and change Joel's appointment to 1pm from 11:30. Thing is, I managed to get two appointments in one day. Neurology at 8:50 and then the endo appointment. At least there are two in one day so it's one trip, though we'll have a two hour wait between appointments and I'll have to bring along his noon meal and feed it to him while we wait between appointments. But 1pm??? AAAAAGH. Seriously, now we are supposed to hang around for three and a half hours??? Or go home and then come back later?? This feels nuts, I feel nuts!!! I am so, so, so tired of appointments, appointments, appointments and for what?? Ask a few questions, let Joel get prodded, agree that everything is same-same and then go home.
So I wasn't too crazy about the time change and the receptionist is going to get back to me. If she tells me that 1pm is the only slot, I'm NOT GOING IN FOR IT! Seriously, the answer is NO. Just phone me at home and ask your questions.
I have an appointment with the metabolic doctor not quite two weeks from now. Know what? I'm thinking of cancelling that one too. Frustrating thing is, the ONE TIME I REALLY WANT to see him is when we are in the hospital. That's when he could help me out by discussing with me how Joel's PBD could be affecting the situation/treatment/symptoms, etc, etc. But he doesn't show up then because he's too busy and he knows other docs are "taking care" of the situation. Well guess what? I'm TOO BUSY just surviving to come into another appointment where we just chat about how things are going and I am ONCE AGAIN asked if I have enough respite/support.
This is what me POCIC's are talking about when we say "THE SYSTEM." (How do you like the acronym? Parents of Chronically Ill Children.) The fact that we are supposed to keep a plethora of appointments the large percentage of which do not really assists us, other than making sure we can still recognize the doctor's face is just one of those things that drive us (or maybe it's just me!) stark raving bonkers. The fact that "the system" keeps my doctors too busy to come in and see us when we really need them, which is when we are in hospital. And when everything is going well, when I really just want to enjoy the good times we are having, THEN they want me to come in and see them.
Just a little rant, to get it out of my system. As time goes on, appointments get more and more crazy-making. Because when we are well, we DON'T want to see the hospital or doctors. Because as time goes on, it (time) also becomes more and more valuable. Because as Joel gets worse, appointments are harder and harder to keep.
So, to try and end on a more positive note, let me tell you that the palliative care team will come into my home for a home visit. The doctors or nurse will come in to my home if there is any problem or concern with Joel. Pretty wonderfully old fashioned. And such a huge relief.
Tuesday, November 2, 2010
News from Cemetery-land, or Favorite Shirt
Yes, cemetery-land. That's where I've been the last few weeks, trying to find a burial plot to purchase for Joel. If this conversation is going to bother you, you might want to stop reading here. I'm annoyed, and when I'm annoyed, I'm even more blunt that usual. So I'm going to be very blunt. You have been warned. Anyway, it is a very unpleasant task, to be sure, buying a burial plot, one I will be so relieved to finally be done with.
So, it's no surprise that I have some gripes about how things are here in the world of purchasing a plot. I think I have already mentioned my annoyance that websites usually don't even list prices so that you have to call them. And yes, as I suspected, that is so that you have to listen to the sales pitch of why THEIR cemetery is a great place to leave your loved one, why the price you are paying is buying you something that is worth it all. UUUUUUUUGGGGGGGH.
I spoke to a very nice lady today, whose name I shall leave out as the city I live in is more like a small town, and someone who reads this might actually know her. So I will say that she was very nice, and I think she was even sincere in saying she was sorry that my son has a terminal illness. She did, at least, wait until she called me back to go into the REAL sales pitch.
I didn't cry. Not once in either conversation. There was a moment when I thought I might be losing my tough and matter of fact edge, but I fought it off. I remained dispassionate and calm and, yup, very matter of fact. Show no weakness. Really, I was more being smart than trying to be tough. Because I knew that if I showed a lot of sadness and pain, she'd be really kind and sympathetic. And that would make it even harder if she then later tried pressure me into something. Like we had some sort of bond. And I refused to let my grief for Joel put me at a disadvantage. I was too angry about it to let down my guard.
The prices for small children were mostly reasonable. Of course, she kept trying to sell me two extra plots, one for Steve and one for me. Those plots were a lot more expensive, let me tell you. She told me that in this way, we could all share the plots. Joel could be buried at our heads, and be under the memorial stone, and then Steve and I side by side. Which sounds really sweet. Of course, if, let's say ten or fifteen years from now, we need to move for any reason, we'd be screwed. Who'd want to buy our two very expensive burial plots that, oh yeah, have a wee babe laid to rest under the memorial stone?? We'd never resell them and we'd have paid almost four times the price as a single children's plot. Heck, buying ahead is a great idea, but isn't buying THAT far head (HOPEFULLY) sort of overdoing the planning for the future?
Anyway, I was annoyed that she tried to sell me plots for Steve and I about three times, even though I told her right away that was just an expense we could not put out at this time.
Then I was annoyed because she tried to sell my dad, through me (because I stupidly told her she could give me the prices in case HE was interested) burial plots.
She made sure to tell me how they put 30% into perpetual maintenance and so I didn't have to worry that they would go the way of some places that went under and now tall, tall grass and weeds cover the graves. (She even NAMED a cemetery in the city where that had happened.) I didn't have to worry that in a hundred years time the grave would be neglected, the company would be going strong and keeping a beautiful place where I, or Joel, could be remember for all eternity, ad nauseam.
Look, nice lady, I actually TOTALLY don't care about 100 years from now. By that time even Caeden won't be coming to visit our graves, and if you think that I believe for one moment that my great, great grandchildren are going to come to my graveside and think what a prodigious line they came from, guess again. Hello, I'm not Joan of Arc, and Steve is not Lennon.
I'm really not worrying about people "keeping me alive" in their memory here on earth. I hope to meet the people I love face to face and BE ALIVE to their faces one day after the resurrection. But I didn't say all that to her. I was silently annoyed, because I felt she was capitalizing on the fears and hopes of people who really want their lives to matter and are afraid that if they don't have a beautiful grave kept for them for over a century, it will mean that they were forgotten, and thus never mattered.
And while I am sure that this company is terrific company, and yes, really, the cemetery is beautiful, as far as cemeteries go, it greatly annoyed me that she tried to explain the hefty sum for the very expensive grave liner by ..... telling me that with a cheap grave liner that didn't go over top of the coffin, it was likely that the backhoe that filled in the grave would cause the coffin to break open with the force of filling the hole. Yeah.... Ok, first of all, IF such a thing truly does happen, I would NEVER have known about it, BUT for her mentioning it.
Of course, she also took that opportunity to mention that the fancier grave liner would keep the coffin in better shape. Dryer and all that sort of thing. I confess I sort of tuned her out by this point.
Because am I ever going to DIG UP my Joel?? Yeah, that is not in the plans. I just want a nice little spot to lay the "clothes" he wore on earth in and come back now and then to think about him a bit and remember. But I will have no interest in those remains once they are laid in there. I'm not an ancient Egyptian, and I don't need to picture a mummy down there. I'm just fine with his body going the way of nature, and that is what is going to happen to it, no matter how many chemicals they pump into it. I mean, there is a reason that we bury a body, instead of "fossilizing" it and keeping it for ever in our living room.
When it comes to Joel's body, or "earthy remains" if you will, I sort of have the same sort of feelings as I do for a favorite shirt. I love that little body. I think it is beautiful. But what is really important is what is INSIDE of it. Once the spirit is gone, it will be nothing more than a worn out shirt. Thread bare and full of holes.
I have had many a favorite shirt in my day. And I confess, I do sort of form an attachment, even to a shirt. And when the day comes that it is so worn it can not be used for charity and must be disposed of, I confess that I don't like to throw it in the "kitchen" garbage. That garbage is stinky and has banana peels and bones and goodness knows what in it. It just feels disrespectful somehow. I mean, I loved that shirt. It's gotta go out in a nice, dry, office or bedroom garbage. You know? But the thought of trying to somehow preserve that shirt forever, put it under glass or bury it in a protective casing seems sort of silly? Because if I'm not in it, what is the point of the shirt??
And of course, I have a much, much greater attachment to my sweet little Joel's body. I can't stop pelting his cheeks with kisses. I love when his little fist wraps my finger in it. He has the cutest little curvy feet. I'd just hug and cuddle him all day if I could.
But what I really love and treasure is what the container holds. Otherwise I could just buy a nice, cuddly doll. But it is the precious little spirit inside that I am so deeply attached to. So, on one hand, I am attached to that little body. And I do want to have a nice feeling about how I disposed of it. I want to treat it in a way that shows I appreciated that it was the temple for a living being. Temple implies a sort of holiness. On the other hand, it's no longer needed. It is worn out and without the owner, it is useless. I just need a respectful good-bye. I don't need a lot of hoopla or people trying to scare me into buying expensive stuff by planting images in my head of coffin smashing back hoes or amazon jungle cemeteries. I just want a plot and a headstone!! Is that too much to ask??
"And after my skin is destroyed, this I know, that in my flesh I shall see God, whom I shall see for myself, and my eyes shall behold, and not another. How my heart yearns within me!" (Job 19:26&27)
So, it's no surprise that I have some gripes about how things are here in the world of purchasing a plot. I think I have already mentioned my annoyance that websites usually don't even list prices so that you have to call them. And yes, as I suspected, that is so that you have to listen to the sales pitch of why THEIR cemetery is a great place to leave your loved one, why the price you are paying is buying you something that is worth it all. UUUUUUUUGGGGGGGH.
I spoke to a very nice lady today, whose name I shall leave out as the city I live in is more like a small town, and someone who reads this might actually know her. So I will say that she was very nice, and I think she was even sincere in saying she was sorry that my son has a terminal illness. She did, at least, wait until she called me back to go into the REAL sales pitch.
I didn't cry. Not once in either conversation. There was a moment when I thought I might be losing my tough and matter of fact edge, but I fought it off. I remained dispassionate and calm and, yup, very matter of fact. Show no weakness. Really, I was more being smart than trying to be tough. Because I knew that if I showed a lot of sadness and pain, she'd be really kind and sympathetic. And that would make it even harder if she then later tried pressure me into something. Like we had some sort of bond. And I refused to let my grief for Joel put me at a disadvantage. I was too angry about it to let down my guard.
The prices for small children were mostly reasonable. Of course, she kept trying to sell me two extra plots, one for Steve and one for me. Those plots were a lot more expensive, let me tell you. She told me that in this way, we could all share the plots. Joel could be buried at our heads, and be under the memorial stone, and then Steve and I side by side. Which sounds really sweet. Of course, if, let's say ten or fifteen years from now, we need to move for any reason, we'd be screwed. Who'd want to buy our two very expensive burial plots that, oh yeah, have a wee babe laid to rest under the memorial stone?? We'd never resell them and we'd have paid almost four times the price as a single children's plot. Heck, buying ahead is a great idea, but isn't buying THAT far head (HOPEFULLY) sort of overdoing the planning for the future?
Anyway, I was annoyed that she tried to sell me plots for Steve and I about three times, even though I told her right away that was just an expense we could not put out at this time.
Then I was annoyed because she tried to sell my dad, through me (because I stupidly told her she could give me the prices in case HE was interested) burial plots.
She made sure to tell me how they put 30% into perpetual maintenance and so I didn't have to worry that they would go the way of some places that went under and now tall, tall grass and weeds cover the graves. (She even NAMED a cemetery in the city where that had happened.) I didn't have to worry that in a hundred years time the grave would be neglected, the company would be going strong and keeping a beautiful place where I, or Joel, could be remember for all eternity, ad nauseam.
Look, nice lady, I actually TOTALLY don't care about 100 years from now. By that time even Caeden won't be coming to visit our graves, and if you think that I believe for one moment that my great, great grandchildren are going to come to my graveside and think what a prodigious line they came from, guess again. Hello, I'm not Joan of Arc, and Steve is not Lennon.
I'm really not worrying about people "keeping me alive" in their memory here on earth. I hope to meet the people I love face to face and BE ALIVE to their faces one day after the resurrection. But I didn't say all that to her. I was silently annoyed, because I felt she was capitalizing on the fears and hopes of people who really want their lives to matter and are afraid that if they don't have a beautiful grave kept for them for over a century, it will mean that they were forgotten, and thus never mattered.
And while I am sure that this company is terrific company, and yes, really, the cemetery is beautiful, as far as cemeteries go, it greatly annoyed me that she tried to explain the hefty sum for the very expensive grave liner by ..... telling me that with a cheap grave liner that didn't go over top of the coffin, it was likely that the backhoe that filled in the grave would cause the coffin to break open with the force of filling the hole. Yeah.... Ok, first of all, IF such a thing truly does happen, I would NEVER have known about it, BUT for her mentioning it.
Of course, she also took that opportunity to mention that the fancier grave liner would keep the coffin in better shape. Dryer and all that sort of thing. I confess I sort of tuned her out by this point.
Because am I ever going to DIG UP my Joel?? Yeah, that is not in the plans. I just want a nice little spot to lay the "clothes" he wore on earth in and come back now and then to think about him a bit and remember. But I will have no interest in those remains once they are laid in there. I'm not an ancient Egyptian, and I don't need to picture a mummy down there. I'm just fine with his body going the way of nature, and that is what is going to happen to it, no matter how many chemicals they pump into it. I mean, there is a reason that we bury a body, instead of "fossilizing" it and keeping it for ever in our living room.
When it comes to Joel's body, or "earthy remains" if you will, I sort of have the same sort of feelings as I do for a favorite shirt. I love that little body. I think it is beautiful. But what is really important is what is INSIDE of it. Once the spirit is gone, it will be nothing more than a worn out shirt. Thread bare and full of holes.
I have had many a favorite shirt in my day. And I confess, I do sort of form an attachment, even to a shirt. And when the day comes that it is so worn it can not be used for charity and must be disposed of, I confess that I don't like to throw it in the "kitchen" garbage. That garbage is stinky and has banana peels and bones and goodness knows what in it. It just feels disrespectful somehow. I mean, I loved that shirt. It's gotta go out in a nice, dry, office or bedroom garbage. You know? But the thought of trying to somehow preserve that shirt forever, put it under glass or bury it in a protective casing seems sort of silly? Because if I'm not in it, what is the point of the shirt??
And of course, I have a much, much greater attachment to my sweet little Joel's body. I can't stop pelting his cheeks with kisses. I love when his little fist wraps my finger in it. He has the cutest little curvy feet. I'd just hug and cuddle him all day if I could.
But what I really love and treasure is what the container holds. Otherwise I could just buy a nice, cuddly doll. But it is the precious little spirit inside that I am so deeply attached to. So, on one hand, I am attached to that little body. And I do want to have a nice feeling about how I disposed of it. I want to treat it in a way that shows I appreciated that it was the temple for a living being. Temple implies a sort of holiness. On the other hand, it's no longer needed. It is worn out and without the owner, it is useless. I just need a respectful good-bye. I don't need a lot of hoopla or people trying to scare me into buying expensive stuff by planting images in my head of coffin smashing back hoes or amazon jungle cemeteries. I just want a plot and a headstone!! Is that too much to ask??
"And after my skin is destroyed, this I know, that in my flesh I shall see God, whom I shall see for myself, and my eyes shall behold, and not another. How my heart yearns within me!" (Job 19:26&27)
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