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.
Friday, November 12, 2010
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)
Friday, October 29, 2010
Be well.
I can't sleep. It was "date night" tonight, and Steve and I stopped for Starbucks on the way home. Now it is almost one in the morning and I can't sleep. Well, time to let a blog out of my head. A topic I think about on and off, but even more so lately, now that I have so many great friends supporting me.
I walk a fine line. On one hand, I don't want to say: "I'm alright. I'll be ok, and I don't need you. I can handle everything. I'm tough, I can make it through this..." etc, etc, etc. You get the picture. It would be 1. a lie, 2. pride goes before a fall, 3. it would make people who care feel unneeded and useless, and see #1.
On the other hand, I sure don't want to bring others down. I mean, I don't want to be like the drowning person who clutched on to others until they sink too. I don't want to suck the life out of anyone as I draw on their empathy and kindness, until they feel depressed and weak, and wish desperately to get free of me.
It is hard to walk this line. I mean, a natural human reaction is I want others to understand me. I want them to know a bit of what I go through. I want them to feel for me, and cut me some slack if at times I appear at the door at 2pm in my pj's. I don't want them to think that losing my child is "easy" (like they ever would, but you know).
Yet I don't want them to be completely immersed in my world or my pain. They have enough of their own to cope with.
What I want them to do is be with me "in the moment" and then I want them to cry or feel sad or understand or hug me. And then I want them to go home and forget as much of that sadness as they can. Yes. I do. I will say it again. I really, truly want you to take advantage of the fact that you DON'T have to be me. You CAN get away from this world. And you need to.
Of course, I don't want you to TOTALLY forget about me. Of course, I want you to remember to check in on me. But I don't want you to feel sad, or depressed or worried. You need to have the joy, contentment or peace that comes to you. Don't waste that. You can help me by crying WITH me. But you can't do anything for me by being worried or sad for me from a distance. So when you are in your world, I want you to try to leave the sadness behind.
I do. Leave it behind, I mean. I can't really escape from it. But I have long been pretty good at "escapism." And that is sometimes NOT a good thing. But sometimes it is. I try and take my grief "in chunks." I try and distract myself at times. I practice the art of escapism, and I do it on purpose at times.
If you have physical pain, then distraction is a great tool. It can really help, and there are no bad side effects to it. Women in labour have done this for thousands of years.
If you have emotional pain, you can't distract yourself forever without paying a price. Emotional pain will out, or else you will end up in a permanent "numbed" state. But distraction, or escape, is a useful tool for allowing yourself to take your pain in "smaller bites." You feel the amount of pain you can handle, then you distract yourself, you escape, until you feel a bit better and can "take on" a bit more of your grief.
So I read a lot of books. And I do watch TV, guilty pleasure. I play my video games. And I hang out with friends. Sometimes I am even watching TV or reading a book or playing a video game while Joel is cuddled in my arms and crying. That might sound bad, but I am protecting my own sanity. I know pretty well at this point, at what stage in his crying I can comfort and distract him. There are times when nothing I can do will calm him one iota. Sometimes it almost seems my efforts make it worse. At this point I hold him so that he knows he is loved and he is not alone. And then, as much as I can (yes, it is hard sometimes, hence DISTRACTION is necessary) I tune out his emotions and I read a book. I try not to let his emotional "wavelength" overwrite mine. I watch TV or I play a silly video game. And when he is better enough that I can tell from his cries that he is ready for it, I start to sing or talk to him, and at the right time, this seems to soothe him.
I do this escaping and distracting so that there is something left to give him when I can help him. So that I'm able to play with him when he feels better. Or so I can comfort him when he's ready. And also, I do it because there is no point in two people being utterly miserable. My suffering can not help him. My support can. But not my suffering. It is useless to him, though it sometimes has benefit to me.
And that is what I want those of you who are so very empathetic to do with me as well. As much as you are able. If I am crying and you can not console me, if I'm not ready for your words, if they only make me cry louder, then just keep me company, but tune out all the pain that you need too. When I'm ready for you to sing to me or cry with me or talk with me, then I will be so grateful for that support. You can immerse yourself in my sorrow for awhile when you are with me. But don't you dare stay there!
When you go home, take care of yourself. Shake off the sadness, people! Have a nice bubble bath. Watch a funny movie! Be silly. Do whatever will help you let go of sorrow.
Of course, if you love Joel too, you have your own right to mourn him as well. I appreciate people who love my boy ever so much. You are allowed to have your own sadness. I just don't want you to carry mine too much as well.
Remember, this is only pain. It is only pain. It can hurt me, but it can NOT harm me. I feel pain and sadness all the time. But so far I have been remarkably free from depression. I know it will get harder once Joel is gone. Even so, it is only pain. Once upon a time, I was going to write in here that this story doesn't have a happy ending. Maybe I even did write it somewhere. Or maybe I even then wrote it and qualified it. This story on my blog does not have a happy ending, because I will never get to write an ending. It's just going "to be continued." I'll be leaving it off in an unfortunate place, because I will be stopping at the point where it is still sad. Where there is still pain and lose. But it's not the end of the story.
All I can say is, if you want to get part two, if you want to see the happy ending, then you better plan to be in heaven. I promise it will be well, well worth it. For many reasons. The smallest of which will be so you get to see the amazing end to this journey we are on. And if you are not sure how to plan for heaven or make sure you are there, then I'd be more than happy to share that with you, just email me. And here's a hint, I'm going to tell you the answer is in Jesus' words in the Bible. I'm sure that comes as no surprise.
For now I'm going to say: Be well, my friends!!! Take the joy and contentment that God gives you and rejoice in it! Because the world will be a better place if you do.
I walk a fine line. On one hand, I don't want to say: "I'm alright. I'll be ok, and I don't need you. I can handle everything. I'm tough, I can make it through this..." etc, etc, etc. You get the picture. It would be 1. a lie, 2. pride goes before a fall, 3. it would make people who care feel unneeded and useless, and see #1.
On the other hand, I sure don't want to bring others down. I mean, I don't want to be like the drowning person who clutched on to others until they sink too. I don't want to suck the life out of anyone as I draw on their empathy and kindness, until they feel depressed and weak, and wish desperately to get free of me.
It is hard to walk this line. I mean, a natural human reaction is I want others to understand me. I want them to know a bit of what I go through. I want them to feel for me, and cut me some slack if at times I appear at the door at 2pm in my pj's. I don't want them to think that losing my child is "easy" (like they ever would, but you know).
Yet I don't want them to be completely immersed in my world or my pain. They have enough of their own to cope with.
What I want them to do is be with me "in the moment" and then I want them to cry or feel sad or understand or hug me. And then I want them to go home and forget as much of that sadness as they can. Yes. I do. I will say it again. I really, truly want you to take advantage of the fact that you DON'T have to be me. You CAN get away from this world. And you need to.
Of course, I don't want you to TOTALLY forget about me. Of course, I want you to remember to check in on me. But I don't want you to feel sad, or depressed or worried. You need to have the joy, contentment or peace that comes to you. Don't waste that. You can help me by crying WITH me. But you can't do anything for me by being worried or sad for me from a distance. So when you are in your world, I want you to try to leave the sadness behind.
I do. Leave it behind, I mean. I can't really escape from it. But I have long been pretty good at "escapism." And that is sometimes NOT a good thing. But sometimes it is. I try and take my grief "in chunks." I try and distract myself at times. I practice the art of escapism, and I do it on purpose at times.
If you have physical pain, then distraction is a great tool. It can really help, and there are no bad side effects to it. Women in labour have done this for thousands of years.
If you have emotional pain, you can't distract yourself forever without paying a price. Emotional pain will out, or else you will end up in a permanent "numbed" state. But distraction, or escape, is a useful tool for allowing yourself to take your pain in "smaller bites." You feel the amount of pain you can handle, then you distract yourself, you escape, until you feel a bit better and can "take on" a bit more of your grief.
So I read a lot of books. And I do watch TV, guilty pleasure. I play my video games. And I hang out with friends. Sometimes I am even watching TV or reading a book or playing a video game while Joel is cuddled in my arms and crying. That might sound bad, but I am protecting my own sanity. I know pretty well at this point, at what stage in his crying I can comfort and distract him. There are times when nothing I can do will calm him one iota. Sometimes it almost seems my efforts make it worse. At this point I hold him so that he knows he is loved and he is not alone. And then, as much as I can (yes, it is hard sometimes, hence DISTRACTION is necessary) I tune out his emotions and I read a book. I try not to let his emotional "wavelength" overwrite mine. I watch TV or I play a silly video game. And when he is better enough that I can tell from his cries that he is ready for it, I start to sing or talk to him, and at the right time, this seems to soothe him.
I do this escaping and distracting so that there is something left to give him when I can help him. So that I'm able to play with him when he feels better. Or so I can comfort him when he's ready. And also, I do it because there is no point in two people being utterly miserable. My suffering can not help him. My support can. But not my suffering. It is useless to him, though it sometimes has benefit to me.
And that is what I want those of you who are so very empathetic to do with me as well. As much as you are able. If I am crying and you can not console me, if I'm not ready for your words, if they only make me cry louder, then just keep me company, but tune out all the pain that you need too. When I'm ready for you to sing to me or cry with me or talk with me, then I will be so grateful for that support. You can immerse yourself in my sorrow for awhile when you are with me. But don't you dare stay there!
When you go home, take care of yourself. Shake off the sadness, people! Have a nice bubble bath. Watch a funny movie! Be silly. Do whatever will help you let go of sorrow.
Of course, if you love Joel too, you have your own right to mourn him as well. I appreciate people who love my boy ever so much. You are allowed to have your own sadness. I just don't want you to carry mine too much as well.
Remember, this is only pain. It is only pain. It can hurt me, but it can NOT harm me. I feel pain and sadness all the time. But so far I have been remarkably free from depression. I know it will get harder once Joel is gone. Even so, it is only pain. Once upon a time, I was going to write in here that this story doesn't have a happy ending. Maybe I even did write it somewhere. Or maybe I even then wrote it and qualified it. This story on my blog does not have a happy ending, because I will never get to write an ending. It's just going "to be continued." I'll be leaving it off in an unfortunate place, because I will be stopping at the point where it is still sad. Where there is still pain and lose. But it's not the end of the story.
All I can say is, if you want to get part two, if you want to see the happy ending, then you better plan to be in heaven. I promise it will be well, well worth it. For many reasons. The smallest of which will be so you get to see the amazing end to this journey we are on. And if you are not sure how to plan for heaven or make sure you are there, then I'd be more than happy to share that with you, just email me. And here's a hint, I'm going to tell you the answer is in Jesus' words in the Bible. I'm sure that comes as no surprise.
For now I'm going to say: Be well, my friends!!! Take the joy and contentment that God gives you and rejoice in it! Because the world will be a better place if you do.
Wednesday, October 27, 2010
A request
Life's been a little less stressful round here as Joel has been mostly happy for the last week. He's still had a few bouts of unexplained discomfort/pain, but mostly he's been full of smiles and laughs in the way that only he has.
It was still a bit of a heavy week. Two children from the PBD support group passed away recently. It's hard to explain what that is like. While your pain is NOTHING compared to what the parents are going through, in a small way if feels like your own child has died. It makes you think/feel some of the emotions you know will be your own someday. I always feel so helpless, being so far away from these fellow travellers on this crazy road. I'd like to go and cry with them, but I can't. So for a few days, there is a knot of anxiety in my belly and some tears here and there.
Steve and I have been trying to work some more things out, for when Joel dies, so we won't be left with the stress of trying to do it while we are hit with his loss. It's not the most fun I've ever had. Right now we are looking into finding a cemetery plot to purchase. Something I don't really want to do right now, but I want to have to do it even less in the days immediately after Joel dies.
More and more, I am aware of the many people around me who are also broken and in pain. Friends and church members who've lost husbands. People with sick or dying children. Families struggling to stay together. It seems like it is all around me, suddenly. Of course, my heart also hurts worse, now, when I do hear about it. Because now I understand pain ever so much better.
And I have a request for the people who live close by and for some crazy reason care about me. I've gotten better at making requests. I've realized that it's not just poor husbands who live with the burden of unspoken wishes. You know, when you think "Surely he KNOWS what would help me/make me happy/be a good gift...___________ (fill in the blank)" And we do that to people too. At least, I have. I don't want to have to ask for anything. Too proud. I just want people to offer "if they REALLY want to" and the tried and true test for that is by not mentioning anything, just waiting to see if they can read my mind or divine it from my life.
So, I'm learning not to do that. I'm learning that people (just like me) don't always know what you would like or need, no matter how much they care or want to help. So, I'm going to tell you something.
Please don't wait until Joel DIES to comfort me. What I mean is, I have this feeling that when Joel dies, people will come over to help. They will bring food. They will bring coffee. They will offer help. They will offer to take care of Caeden. They will offer to take me out or sit and listen or cry with me.
These are all good things. I might need some of that, after Joel dies. But in a strange way, I think I might need it just as much or more as we get slowly nearer to the final stages of Joel dying. I don't know how to explain this very well. Dying is so hard. Watching someone you love die is so hard. Watching someone you love who is a wee child die is excruciating.
People have been so great when Joel is in hospital. I am very, very grateful. My case coordinator can't believe how people will babysit for me or help me out. It is really amazing.
And every time there is an illness or problem, it seems more and more serious. I'm asking for a difficult thing here. I'm asking for something that most people can't, or won't do. I'm asking my best friends to be in this for the long haul, and they will likely get precious little in return...
Because Joel's dying could take months. I mean, there could be months of in and out of the hospital. Months of losing more and more strength. Months of fixing problem after problem. Needing more oxygen. Who knows??
So I'm asking you all to walk with me through it. I mean, I can't think of asking for something more difficult. I'm asking you to walk with me through the fire. I'm asking you to "debrief" me after hospital stays, by which I mean come over and talk it out with me. I'm asking you to listen to me go on and on about Joel's health and how much it hurts and about what scares me about his death. I'm asking you to visit when he's in hospital and I'm asking you to visit when he's out of hospital. Maybe when I'm having a rough week, take me out for coffee in the evening, or just sit WITH me while I hold my unhappy child and maybe even cry. I'm asking you to send me emails to encourage me, maybe a verse or two if you have found one you like. I'm even asking you to ask me the "hard" questions. Some of this you are doing already, I can't thank you enough... I'm just afraid I might need "more" of it soon...
I've been trying to think of what sort of questions those "hard" questions are, what sort of things you could ask or say to get me to unlock my box of grief and let it out. It's hard to make a list. And it sounds hideous to write it out. But yes, I really do want you to ask me even hard things. A good friend who had a baby at the start of the summer was brave enough to ask me if it would bother me when she had the baby. She wanted to know if I was going to avoid her because it was too painful. I was grateful for her honesty. I crave it. We had a good discussion about it. And I was happy to get a visit from her, baby and all. So I do want you to ask me the hard questions, even if they are about Joel's death.
And really, truly, please come by to pray with me. I crave this as well. I don't know how hard it might be to pray after Joel is gone, but I can pray now, so please, come and pray with me.
I've been praying really hard that God will take Joel with out a long and lingering death. I'm asking Him to take Joel "suddenly" if possible, at the end of the good days he has left. But I don't know if God's going to say yes to that one. So even if it takes months and months, I'm asking for some TLC grief care in those nails on a chalkboard of my heart kind of months where my life might be nothing but sickness and sadness weaving in and out.
In asking you this, I'm asking for quite a feat of friendship endurance. I feel guilty asking for it. But still, here I am, asking you, even though I have a good idea of what it might cost you to join in my life and my grief. I can only hope I'll be as good a friend to you in your time of need, and yes, I promise, if I can "pay you back," I will.
May God bless you as you have already given so much to me, as Jesus said "good measure, pressed down, shaken together, and running over..." (Luke 6:38)
It was still a bit of a heavy week. Two children from the PBD support group passed away recently. It's hard to explain what that is like. While your pain is NOTHING compared to what the parents are going through, in a small way if feels like your own child has died. It makes you think/feel some of the emotions you know will be your own someday. I always feel so helpless, being so far away from these fellow travellers on this crazy road. I'd like to go and cry with them, but I can't. So for a few days, there is a knot of anxiety in my belly and some tears here and there.
Steve and I have been trying to work some more things out, for when Joel dies, so we won't be left with the stress of trying to do it while we are hit with his loss. It's not the most fun I've ever had. Right now we are looking into finding a cemetery plot to purchase. Something I don't really want to do right now, but I want to have to do it even less in the days immediately after Joel dies.
More and more, I am aware of the many people around me who are also broken and in pain. Friends and church members who've lost husbands. People with sick or dying children. Families struggling to stay together. It seems like it is all around me, suddenly. Of course, my heart also hurts worse, now, when I do hear about it. Because now I understand pain ever so much better.
And I have a request for the people who live close by and for some crazy reason care about me. I've gotten better at making requests. I've realized that it's not just poor husbands who live with the burden of unspoken wishes. You know, when you think "Surely he KNOWS what would help me/make me happy/be a good gift...___________ (fill in the blank)" And we do that to people too. At least, I have. I don't want to have to ask for anything. Too proud. I just want people to offer "if they REALLY want to" and the tried and true test for that is by not mentioning anything, just waiting to see if they can read my mind or divine it from my life.
So, I'm learning not to do that. I'm learning that people (just like me) don't always know what you would like or need, no matter how much they care or want to help. So, I'm going to tell you something.
Please don't wait until Joel DIES to comfort me. What I mean is, I have this feeling that when Joel dies, people will come over to help. They will bring food. They will bring coffee. They will offer help. They will offer to take care of Caeden. They will offer to take me out or sit and listen or cry with me.
These are all good things. I might need some of that, after Joel dies. But in a strange way, I think I might need it just as much or more as we get slowly nearer to the final stages of Joel dying. I don't know how to explain this very well. Dying is so hard. Watching someone you love die is so hard. Watching someone you love who is a wee child die is excruciating.
People have been so great when Joel is in hospital. I am very, very grateful. My case coordinator can't believe how people will babysit for me or help me out. It is really amazing.
And every time there is an illness or problem, it seems more and more serious. I'm asking for a difficult thing here. I'm asking for something that most people can't, or won't do. I'm asking my best friends to be in this for the long haul, and they will likely get precious little in return...
Because Joel's dying could take months. I mean, there could be months of in and out of the hospital. Months of losing more and more strength. Months of fixing problem after problem. Needing more oxygen. Who knows??
So I'm asking you all to walk with me through it. I mean, I can't think of asking for something more difficult. I'm asking you to walk with me through the fire. I'm asking you to "debrief" me after hospital stays, by which I mean come over and talk it out with me. I'm asking you to listen to me go on and on about Joel's health and how much it hurts and about what scares me about his death. I'm asking you to visit when he's in hospital and I'm asking you to visit when he's out of hospital. Maybe when I'm having a rough week, take me out for coffee in the evening, or just sit WITH me while I hold my unhappy child and maybe even cry. I'm asking you to send me emails to encourage me, maybe a verse or two if you have found one you like. I'm even asking you to ask me the "hard" questions. Some of this you are doing already, I can't thank you enough... I'm just afraid I might need "more" of it soon...
I've been trying to think of what sort of questions those "hard" questions are, what sort of things you could ask or say to get me to unlock my box of grief and let it out. It's hard to make a list. And it sounds hideous to write it out. But yes, I really do want you to ask me even hard things. A good friend who had a baby at the start of the summer was brave enough to ask me if it would bother me when she had the baby. She wanted to know if I was going to avoid her because it was too painful. I was grateful for her honesty. I crave it. We had a good discussion about it. And I was happy to get a visit from her, baby and all. So I do want you to ask me the hard questions, even if they are about Joel's death.
And really, truly, please come by to pray with me. I crave this as well. I don't know how hard it might be to pray after Joel is gone, but I can pray now, so please, come and pray with me.
I've been praying really hard that God will take Joel with out a long and lingering death. I'm asking Him to take Joel "suddenly" if possible, at the end of the good days he has left. But I don't know if God's going to say yes to that one. So even if it takes months and months, I'm asking for some TLC grief care in those nails on a chalkboard of my heart kind of months where my life might be nothing but sickness and sadness weaving in and out.
In asking you this, I'm asking for quite a feat of friendship endurance. I feel guilty asking for it. But still, here I am, asking you, even though I have a good idea of what it might cost you to join in my life and my grief. I can only hope I'll be as good a friend to you in your time of need, and yes, I promise, if I can "pay you back," I will.
May God bless you as you have already given so much to me, as Jesus said "good measure, pressed down, shaken together, and running over..." (Luke 6:38)
Sunday, October 24, 2010
Email address
This is just a quick note for Susan, or anyone else out there reading my blog, who isn't on my email or facebook, and would like to get a hold of me. I know that some of you are not comfortable with putting a comment up "for the world to see" but would still like to send me a message. So here is my email address: karen_7lee@yahoo.ca
One of these days I'll get things a bit more sorted out, and figure out how to put in on my sidebar or something. Hopefully, for now, if you want to reach me, you will see this blog post. And that way I'll be able to message you back, too!
Again, thanks you to those who have commented or emailed or facebooked me. I really do appreciate it very much.
One of these days I'll get things a bit more sorted out, and figure out how to put in on my sidebar or something. Hopefully, for now, if you want to reach me, you will see this blog post. And that way I'll be able to message you back, too!
Again, thanks you to those who have commented or emailed or facebooked me. I really do appreciate it very much.
Saturday, October 23, 2010
Pancake Musings
Thanks all for praying for Joel, and for your words of encouragement. Much appreciated. I'm relieved to say that, at least for now, Joel seems to be feeling better. I have not given him any pain meds yet today, and so far no fussiness or tears. No smiles yet either, but he did "say" a few things, and that is much better than it was.
I made pancakes this morning. And I'm doing something I have always thought out of character for me and my blog, I'm going to tell you my recipe. :) Because I altered it myself, and I'm proud of how it turned out! It's just your basic pancake recipe from Company's Coming, but I jazzed it up.
Ingredient:
1 &1/2 cups flour
1 Tbsp sugar
1 Tbsp baking power
1/2 tsp salt
To this first part I added 1/3 cup Sunny Boy cereal. It's basically just a nice mixture of whole grains, which I'm happy to hide in this recipe for pancakes that my boys love, because otherwise it's really hard to get them to eat anything not utterly free from fiber and bleached white. Of course, then you mix the above dry ingredients together.
1 egg, beaten
2 Tbsp of cooking oil
1 & 1/2 cups milk (I like to go a bit generous on the milk)
And: half a cup of frozen blueberries, half a cup of whole frozen cranberries, half a cup of pecan pieces. The pecan pieces nicely "hide" the Sunny boy cereal, which just passes for bites of nuts and sort of has a "nutty" taste in the pancakes. Lots of fiber in these pancakes! Not to mention how good berries are. Oh, and if you want to make them seem "sweeter" without adding any sugar, add a 1/2 tsp of vanilla. It's amazing how vanilla can make things seem a lot sweeter.
Anyway, my boys love them!
I do love to mess around with recipes and come up with my own creations. Sometimes they turn out great. Other times, not so much. I've made a lot of flops. But I find cooking is a really good and "safe" place to take risks and be inventive. Plus, it really helps that I took a couple of home ec. courses way back in high school, and learned what some of the various ingredients "do" in a recipe. Knowing the WHYS of something makes it much easier to work with it all.
I've always had a big desire to know the WHY of things. I couldn't understand algebra when I didn't know why I did something. I find it much easier to figure out the world of medicine and get better care for Joel when I understand as much of the WHY as possible.
What I don't know the WHY of, is Joel suffering. It would be hard, no matter what. But sometimes I ask God, "Is THIS part really NECESSARY??" I know that He has used Joel to change me. I know that Joel has made a difference by being alive here in my world, and I have even seen some good things happen through it all. It's a lot easier to understand my own suffering than to understand Joel's.
I don't know everything God is doing with this recipe, because some of the ingredients are very puzzling to me. Or maybe even baffling. That is a better way to describe it. God, couldn't you do the same thing here with out putting in Joel having to suffer?
And I don't know the answer to that question. In the end, I have no choice but to trust God and trust what I do know. (I guess Caeden making pancakes would use some very different ingredients than I do too. No doubt there would be a lot of sugar, berries, and vanilla, but I don't think the pancakes would taste very good.)
And here is what I do know. I know that "Every good and perfect gift comes from the Father of lights, with whom there is no variation or shadow of turning." (James 1:17) Which sort of implies that God doesn't give us anything evil.
Some people say that even if God doesn't CAUSE this sort of suffering, He still ALLOWS it, even though He could stop it, which is basically the same thing. I don't see it that way, myself. I hope there is a BIG difference between whether I would go and slap Caeden around or beat him, and me letting him do things where he will, most likely, eventually get hurt, like ride a bike, or play football, or become a policeman or fireman. I mean, in this case, isn't there a big difference between saying I caused Caedens hurt or pain, or that I allowed life to happen to him even though I could wrap him in plastic and refuse to let him take any risks? I don't know, but it does make a difference to me, knowing that God didn't cause this suffering, He allowed it.
I know that Jesus revealed God's heart, as He claimed "If you had known Me, you would have known My Father also, and from how on you know Him and have seen Him." (John 14:7)
I know that when Jesus saw Mary weeping over her brother's death, and all the others weeping as well, "He groaned in the spirit and was troubled... Jesus wept."
I know that when Jesus "saw the multitudes, He was moved with compassion for them, because they were weary and scattered."
I know of not one single person that Jesus ever turned away or refused to help when they asked, whether they were born high or low, whether they were child or woman or servant or leper or sinner or thief.
So I know God's heart, through the person of Jesus. I see nothing there but love, compassion, mercy, kindness. This brings me comfort, even though I still don't understand WHY Joel suffers.
That WHY will continue to stick in my throat, each and every time that Joel's pain makes me cry out myself, wondering when the relief is coming. It's a question born of pain, which will likely not be answered until pain is finally answered permanently. I'm grateful that I have Jesus to hold on to and to comfort me.
Thanks everyone for all the prayers and encouragement.
I made pancakes this morning. And I'm doing something I have always thought out of character for me and my blog, I'm going to tell you my recipe. :) Because I altered it myself, and I'm proud of how it turned out! It's just your basic pancake recipe from Company's Coming, but I jazzed it up.
Ingredient:
1 &1/2 cups flour
1 Tbsp sugar
1 Tbsp baking power
1/2 tsp salt
To this first part I added 1/3 cup Sunny Boy cereal. It's basically just a nice mixture of whole grains, which I'm happy to hide in this recipe for pancakes that my boys love, because otherwise it's really hard to get them to eat anything not utterly free from fiber and bleached white. Of course, then you mix the above dry ingredients together.
1 egg, beaten
2 Tbsp of cooking oil
1 & 1/2 cups milk (I like to go a bit generous on the milk)
And: half a cup of frozen blueberries, half a cup of whole frozen cranberries, half a cup of pecan pieces. The pecan pieces nicely "hide" the Sunny boy cereal, which just passes for bites of nuts and sort of has a "nutty" taste in the pancakes. Lots of fiber in these pancakes! Not to mention how good berries are. Oh, and if you want to make them seem "sweeter" without adding any sugar, add a 1/2 tsp of vanilla. It's amazing how vanilla can make things seem a lot sweeter.
Anyway, my boys love them!
I do love to mess around with recipes and come up with my own creations. Sometimes they turn out great. Other times, not so much. I've made a lot of flops. But I find cooking is a really good and "safe" place to take risks and be inventive. Plus, it really helps that I took a couple of home ec. courses way back in high school, and learned what some of the various ingredients "do" in a recipe. Knowing the WHYS of something makes it much easier to work with it all.
I've always had a big desire to know the WHY of things. I couldn't understand algebra when I didn't know why I did something. I find it much easier to figure out the world of medicine and get better care for Joel when I understand as much of the WHY as possible.
What I don't know the WHY of, is Joel suffering. It would be hard, no matter what. But sometimes I ask God, "Is THIS part really NECESSARY??" I know that He has used Joel to change me. I know that Joel has made a difference by being alive here in my world, and I have even seen some good things happen through it all. It's a lot easier to understand my own suffering than to understand Joel's.
I don't know everything God is doing with this recipe, because some of the ingredients are very puzzling to me. Or maybe even baffling. That is a better way to describe it. God, couldn't you do the same thing here with out putting in Joel having to suffer?
And I don't know the answer to that question. In the end, I have no choice but to trust God and trust what I do know. (I guess Caeden making pancakes would use some very different ingredients than I do too. No doubt there would be a lot of sugar, berries, and vanilla, but I don't think the pancakes would taste very good.)
And here is what I do know. I know that "Every good and perfect gift comes from the Father of lights, with whom there is no variation or shadow of turning." (James 1:17) Which sort of implies that God doesn't give us anything evil.
Some people say that even if God doesn't CAUSE this sort of suffering, He still ALLOWS it, even though He could stop it, which is basically the same thing. I don't see it that way, myself. I hope there is a BIG difference between whether I would go and slap Caeden around or beat him, and me letting him do things where he will, most likely, eventually get hurt, like ride a bike, or play football, or become a policeman or fireman. I mean, in this case, isn't there a big difference between saying I caused Caedens hurt or pain, or that I allowed life to happen to him even though I could wrap him in plastic and refuse to let him take any risks? I don't know, but it does make a difference to me, knowing that God didn't cause this suffering, He allowed it.
I know that Jesus revealed God's heart, as He claimed "If you had known Me, you would have known My Father also, and from how on you know Him and have seen Him." (John 14:7)
I know that when Jesus saw Mary weeping over her brother's death, and all the others weeping as well, "He groaned in the spirit and was troubled... Jesus wept."
I know that when Jesus "saw the multitudes, He was moved with compassion for them, because they were weary and scattered."
I know of not one single person that Jesus ever turned away or refused to help when they asked, whether they were born high or low, whether they were child or woman or servant or leper or sinner or thief.
So I know God's heart, through the person of Jesus. I see nothing there but love, compassion, mercy, kindness. This brings me comfort, even though I still don't understand WHY Joel suffers.
That WHY will continue to stick in my throat, each and every time that Joel's pain makes me cry out myself, wondering when the relief is coming. It's a question born of pain, which will likely not be answered until pain is finally answered permanently. I'm grateful that I have Jesus to hold on to and to comfort me.
Thanks everyone for all the prayers and encouragement.
Thursday, October 21, 2010
Lows on the scale of 1 to 10
I feel an urge to write here, but I have nothing in mind to write. Not that I haven't had some blog type material floating up in my mind to put down. Just that I sure don't have it in me right now to write any of that stuff.
Why?
Because today, using my good ole scale of 1-10, was really not that great. It's been a tough few days. I'd say that emotionally I have been somewhere around a 3-4. Mentally, maybe around there too. Physically, I have still been sick, and really tired. Like I'd REALLY like to stay in bed most of the day sort of tired. And spiritually, I have started to be pulled down by all the other "low" readings in my life.
And as long as at least ONE of those categories can score above a 5, I can usually still pull out a blog from some of the stuff rolling around in my brain, and it even makes me feel better.
But today, all those potential topics just can't inspire the motivation to get em out of the storage cabinets in my head. I guess this blog is an explanation of why that is.
Things haven't been so great with Joel for a couple a days now. That is a big part of it. I mean, for about 2 days now he has been unhappy. No, not unhappy. I think he's been in pain, and while I have been using meds to keep him somewhat comfortable, it's not been a happy time. I'm thinking we are going to have to make some sort of medical visit soon, to see what can be done.
And I have been seeing more instances where Joel seems to get too tired to breathe well, and his 02 sats drop as he breathes quickly and rapidly. Putting him on 02 usually has him recovered in about half an hour, but it is pretty discouraging.
And I have had a lot of "stuff" in my mind. Steve and I are planning on visiting a cemetery to decide if we want to buy a plot there. I've been thinking more and more about how aggressively to treat problems as they come along. Wondering about when it will be time to start tipping the scales more toward Joel's comfort and less toward long term life expectancy.
I've been thinking about what would happen if Joel died while with our respite worker. I've been meaning to ask our co-ordinator if she'll have counseling provided to her after Joel dies, because I'm worried about how hard it will be on her, knowing how attached she is to Joel. I've got lots of people to worry about in this way, but I feel a special responsibility for her, because we asked her to come into our home and become attached to Joel, it wasn't something she had to do. And I will have lots of support, but who will make sure she's ok?
I'm trying to keep it in my head that when something does kill Joel, I'm going to need to remember that Steve and I saved Joel's life many times over, so that I won't feel that we let him down when he does die. Because if Joel has a fatal bleed, it's gonna be easy to say "If only I had gotten his clotting checked more frequently." And if Joel catches pneumonia, it's gonna be easy to say "If only I had been more careful of germs," or "If only I had brought him in sooner." There are a few ways that Joel could die where it would be hard to blame myself. But most of them go the other way.
So whenever I make a decision to wait to bring him into the hospital, I remind myself that Steve and I (with the help of some other good people and God) have "given" Joel extra time by being caring parents and taking care of him. Getting him a feeding tube so he could get enough to eat. And by bringing him in over and over until he got the breathing support he needed. By getting his clotting factors checked. And by catching his adrenal insufficiency before it killed him. I remind myself that if it wasn't for medical intervention, he would have likely died at about 5 months of age. And so, I carry these "life saving" acts with me, as a ward against the day when I am afraid it will be hard not to feel I have failed him, even though I know I have been set an impossible task as his mother, for I can not raise him to adulthood.
And underneath all the thoughts, I carry a vague anxiety that sharpens from time to time into a feeling that is strangely like fear. I think I fear Joel's death. I suppose that doesn't sound very spiritual from someone who claims as great a belief, even a trust, in God as I have. But emotions are strange, strange things. I am not afraid of death for Joel. And I know that I'm going to be ok, in the long run. I know both these things. But there is something about his slowly advancing death that makes me feel something very much like fear, at times the anxiety sharpens so strongly that it makes me think of terror. A dull and vague sort of terror. And I don't really know what I'm afraid of. I mean, I can pick it all apart, detail by detail. I can logic it, and I can reason it. But I still can't really find a good solid reason for this strong of an emotional reaction. Unless it's just all the "little" worries that grow into a giant.
And of course, there is the pain. Always the pain. At times it would even bore me. But there it is, still. Boring or not, the pain is piercing and unavoidable, and in times of Joel's suffering, it seems everlasting. It is strange how feeling the way I have the last two or three days can feel never ending.
There are my thoughts. And there are my emotions. And God? I speak to Him, and I know He hears, but it is sometimes hard to hear Him through the pain. Mostly I have a question running through my heart over and over and over again. I think this is what drowns out His voice. This question. "Why? Why, why, why... why does it have to be so very hard to die?" In the end, I know the question will fade, with or without the answer given. I know, because these Questions are no strangers to me. They pass, and peace comes again. Even joy. But they are like a storm that beats down on you, until at times it seems there is nothing but thunder clapping over and over, and rain dripping off you, cold, wet, and stinging, noise and coldness and that is all you can sense.
Sometimes these storms pass so quickly the sun is shining and the rainbow is out even before I can communicate them to someone. So, if you read this blog and then call me tomorrow and I'm fine, don't be surprised. But actually, continuing in the vein of honesty here, please don't call me. I really can't say much on the phone, and I hate crying over a phone line anyhow. If you want to, come over. Because a warm, breathing body is just so much better than a disembodied voice. And if you can't come over, then leave a comment or email me your encouragement. My preference is: in person, via Internet, and phone calls dead last. And if you can't get to do any of those things, I understand. Just please pray for my little boy. Oh, and for me too.
Why?
Because today, using my good ole scale of 1-10, was really not that great. It's been a tough few days. I'd say that emotionally I have been somewhere around a 3-4. Mentally, maybe around there too. Physically, I have still been sick, and really tired. Like I'd REALLY like to stay in bed most of the day sort of tired. And spiritually, I have started to be pulled down by all the other "low" readings in my life.
And as long as at least ONE of those categories can score above a 5, I can usually still pull out a blog from some of the stuff rolling around in my brain, and it even makes me feel better.
But today, all those potential topics just can't inspire the motivation to get em out of the storage cabinets in my head. I guess this blog is an explanation of why that is.
Things haven't been so great with Joel for a couple a days now. That is a big part of it. I mean, for about 2 days now he has been unhappy. No, not unhappy. I think he's been in pain, and while I have been using meds to keep him somewhat comfortable, it's not been a happy time. I'm thinking we are going to have to make some sort of medical visit soon, to see what can be done.
And I have been seeing more instances where Joel seems to get too tired to breathe well, and his 02 sats drop as he breathes quickly and rapidly. Putting him on 02 usually has him recovered in about half an hour, but it is pretty discouraging.
And I have had a lot of "stuff" in my mind. Steve and I are planning on visiting a cemetery to decide if we want to buy a plot there. I've been thinking more and more about how aggressively to treat problems as they come along. Wondering about when it will be time to start tipping the scales more toward Joel's comfort and less toward long term life expectancy.
I've been thinking about what would happen if Joel died while with our respite worker. I've been meaning to ask our co-ordinator if she'll have counseling provided to her after Joel dies, because I'm worried about how hard it will be on her, knowing how attached she is to Joel. I've got lots of people to worry about in this way, but I feel a special responsibility for her, because we asked her to come into our home and become attached to Joel, it wasn't something she had to do. And I will have lots of support, but who will make sure she's ok?
I'm trying to keep it in my head that when something does kill Joel, I'm going to need to remember that Steve and I saved Joel's life many times over, so that I won't feel that we let him down when he does die. Because if Joel has a fatal bleed, it's gonna be easy to say "If only I had gotten his clotting checked more frequently." And if Joel catches pneumonia, it's gonna be easy to say "If only I had been more careful of germs," or "If only I had brought him in sooner." There are a few ways that Joel could die where it would be hard to blame myself. But most of them go the other way.
So whenever I make a decision to wait to bring him into the hospital, I remind myself that Steve and I (with the help of some other good people and God) have "given" Joel extra time by being caring parents and taking care of him. Getting him a feeding tube so he could get enough to eat. And by bringing him in over and over until he got the breathing support he needed. By getting his clotting factors checked. And by catching his adrenal insufficiency before it killed him. I remind myself that if it wasn't for medical intervention, he would have likely died at about 5 months of age. And so, I carry these "life saving" acts with me, as a ward against the day when I am afraid it will be hard not to feel I have failed him, even though I know I have been set an impossible task as his mother, for I can not raise him to adulthood.
And underneath all the thoughts, I carry a vague anxiety that sharpens from time to time into a feeling that is strangely like fear. I think I fear Joel's death. I suppose that doesn't sound very spiritual from someone who claims as great a belief, even a trust, in God as I have. But emotions are strange, strange things. I am not afraid of death for Joel. And I know that I'm going to be ok, in the long run. I know both these things. But there is something about his slowly advancing death that makes me feel something very much like fear, at times the anxiety sharpens so strongly that it makes me think of terror. A dull and vague sort of terror. And I don't really know what I'm afraid of. I mean, I can pick it all apart, detail by detail. I can logic it, and I can reason it. But I still can't really find a good solid reason for this strong of an emotional reaction. Unless it's just all the "little" worries that grow into a giant.
And of course, there is the pain. Always the pain. At times it would even bore me. But there it is, still. Boring or not, the pain is piercing and unavoidable, and in times of Joel's suffering, it seems everlasting. It is strange how feeling the way I have the last two or three days can feel never ending.
There are my thoughts. And there are my emotions. And God? I speak to Him, and I know He hears, but it is sometimes hard to hear Him through the pain. Mostly I have a question running through my heart over and over and over again. I think this is what drowns out His voice. This question. "Why? Why, why, why... why does it have to be so very hard to die?" In the end, I know the question will fade, with or without the answer given. I know, because these Questions are no strangers to me. They pass, and peace comes again. Even joy. But they are like a storm that beats down on you, until at times it seems there is nothing but thunder clapping over and over, and rain dripping off you, cold, wet, and stinging, noise and coldness and that is all you can sense.
Sometimes these storms pass so quickly the sun is shining and the rainbow is out even before I can communicate them to someone. So, if you read this blog and then call me tomorrow and I'm fine, don't be surprised. But actually, continuing in the vein of honesty here, please don't call me. I really can't say much on the phone, and I hate crying over a phone line anyhow. If you want to, come over. Because a warm, breathing body is just so much better than a disembodied voice. And if you can't come over, then leave a comment or email me your encouragement. My preference is: in person, via Internet, and phone calls dead last. And if you can't get to do any of those things, I understand. Just please pray for my little boy. Oh, and for me too.
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