You know that folksy little prayer "God grant me..." where you ask God to help you change what can be changed, accept what can't be changed and have wisdom to know the difference between the two?
Well, no where have I found that more of a challenge than in my role as parent, and thus, protector.
Of course, as some might be quick to point out, God is Joel's real protector (and Caeden too, but he is more "straightforward" of a case). Sure. I get that. I know that God knows what is going to happen in the future, I know that He's got Joel's life in His hands.
But it isn't always as straightforward as just humming along sure that there is nothing we have to do as God has got it all. And that is the part that is difficult.
You see, ultimately God is Joel's protector. But for whatever reason, He appears to have left Joel under our care!
I mean, think about what God did with parents. New people come into this world. These new people know nothing about how this world works, what is safe, what is good, what is right. They are pretty clueless. Top it off with the fact that when they get here their bodies can't really do much.
Which is truly a good thing. God knew what He was doing there. Can you imagine if somehow a TODDLER could spring forth from your womb?? All that capability and doesn't even have that trust bond yet. Doesn't even know who "mommy" is, let alone words like "no."
But that means that this brand new little person is totally and completely vulnerable. Unlike turtles, or fish, this little human would have no chance of survival if God did not have this great idea called "parents." And knowing our proclivity for selfishness, He made sure that most of us would do the right thing. Left strictly to our own devices, I'm not sure how many of us would be unselfish enough to burden ourselves with a person for whom one must do everything, even clean up their poop.
So God put this incredible kind of love inside of us. He did this without asking for our permission, cause He knew in the end that families would be one of His greatest blessings on earth. It was a wonderful gift, the way He enabled us to immediately and completely love a person whom we have only just met. I don't know many people who would give their life for a stranger on a subway, but I don't know many parents who wouldn't give their lives for that new little bundle they just brought forth in tears and pain just a few moments ago.
That's amazing and wonderful to me! That is so beautiful, it just about tears my heart out to think about it. If you ever doubt God's goodness here on earth, think about what He gave us, when he created parents and children.
But the flip side of it is, that He gave us this blessing and privilege, but it is also a fearsome responsibility. Could God just miraculously protect every single baby from birth until it can care for itself? Well, sure, I guess so, though it doesn't seem like it would be the sort of thing He WOULD do. If I know God at all, then I gotta say it doesn't surprise me in the least that He has put us in charge of watching over these little people. It's just the sort of thing He'd do.
So every protective instinct, all the love and concern and stress I have when Joel is sick, it is that way because God made it to be so. It is part of His plan that Steve and I care for Joel. He gave Joel to us to take care of. He expects us to take care of Joel. I can't say "Gosh, I'm really tired this week. Joel is not breathing too well, but I'm just going to trust God to make sure that Joel doesn't suffocate and I'm going to take a nap." I wish sometimes it DID work that way. But it doesn't. Steve and I are the ones God has left to make the decisions. To watch over Joel. To have the wisdom to know when to fight for Joel and when to let him go.
This is a difficult and scary thing. It is sometimes hard to know when I can say "Well, God has shut that door, I can relax that I did my best, and trust that He is taking care of it." Like when the doctors refused to send Joel home with an oxygen monitor. I would have felt much better having one. They didn't feel it was necessary. So I had to remind myself that I had prayed and asked God to let us take home any equipment that might help us. And that I had to trust that He had given the doctors wisdom enough for this.
But it is not easy when you are a protector. When you have that protective instinct God has given you, you first response is to fret, worry, and keep working on it.
And sometimes that is what you need to do. Like right now, when my instinct is telling me we should get Joel's adenoids and tonsils removed NOW, not later. The ENT's so far don't agree. I really think that so far I have not done all that is my responsibility to clear the problem up.
God doesn't magically fix everything for us. Sometimes it is our job to keep on trying and fighting for our child. That is why God put that love inside us in the first place. He was making it easier for us to do right by our children. He was protecting our children by making protecting our children as natural as breathing to us.
This is the tension for us parents, particularly parents of sick children. I need that wisdom to know what to accept and what to change. So I gotta stay in close contact with God. When I get caught up in things at the hospital, it is easy to forget that. But without it, I'm just flailing around like a drowning woman, trying to grab any sort of splinter of wood that drifts by. Panic sets in.
It is a fearsome thing to feel the responsibility of a little life put in your hands. It is a great privilege. It is a wonderful gift to be able to love so well and so quickly. But it is a difficult task to walk in wisdom, humbly with our God, so that we might learn to change the things we can, to accept the things we can't, and to know the difference between the two.
Tuesday, April 13, 2010
Saturday, April 10, 2010
Dreams
I never dream about Joel. I never dream about him being sick, or dying. No nightmares. And no "wishful thinking" dreams either. I mean, I never dream that someone found a cure, or that they realized that Joel never had a PBD all along. I just never dream about him.
It strikes me as strange. Because I remember at least one dream, sometimes two or three, every morning when I wake up. I mean, it's not like I'm one of those people who claims not to dream. I'm a virtual fountain of dreams.
It makes me wonder. Why is it that Joel never makes an appearance? Do my anxieties come out in non-related dreams? Or does my constant day time sorting and resorting through it all just exhaust it all out of my emotional system?
I find it surprising and puzzling. I have never before experienced an anxiety, or grieved a loss, that did not turn up in some way during my night time brain recharging.
I mean, I have neither been in school, nor taught myself for years now. But I STILL keep having those dreams. The dreams of tests I didn't study for, or the dreams of walking into a classroom with no lesson plan and a hoard of unruly students... ugh. These dreams I have had for years and years, though even university is almost 10 years past, and I haven't taught for three.
But I suspect very much that when Joel is actually gone, he will suddenly start making appearances in my dreams. I expect when that happens I will start to have the nightmares about Joel needing my help, and I can't get to him. Or the dreams that he is still here and completely well.
I'm expecting this, because the last time I went through grief, this is what happened. It happened for years, before it finally stopped. I really can't imagine it won't happen now.
Maybe there is just so much actually happening in my head and my heart about it all right now, that there really is nothing left to come out at night.
Whatever the reason, I find it strange and puzzling. And I am grateful. Yes, grateful. I cry enough in the day, I appreciate the relief that sleep can still bring. Walking into a classroom of grade nines with no idea what I'm teaching almost a relief when it comes to nightmares. It sure could be much, much worse.
So, thank you God, for leaving me a sleep refuge. I need it!
It strikes me as strange. Because I remember at least one dream, sometimes two or three, every morning when I wake up. I mean, it's not like I'm one of those people who claims not to dream. I'm a virtual fountain of dreams.
It makes me wonder. Why is it that Joel never makes an appearance? Do my anxieties come out in non-related dreams? Or does my constant day time sorting and resorting through it all just exhaust it all out of my emotional system?
I find it surprising and puzzling. I have never before experienced an anxiety, or grieved a loss, that did not turn up in some way during my night time brain recharging.
I mean, I have neither been in school, nor taught myself for years now. But I STILL keep having those dreams. The dreams of tests I didn't study for, or the dreams of walking into a classroom with no lesson plan and a hoard of unruly students... ugh. These dreams I have had for years and years, though even university is almost 10 years past, and I haven't taught for three.
But I suspect very much that when Joel is actually gone, he will suddenly start making appearances in my dreams. I expect when that happens I will start to have the nightmares about Joel needing my help, and I can't get to him. Or the dreams that he is still here and completely well.
I'm expecting this, because the last time I went through grief, this is what happened. It happened for years, before it finally stopped. I really can't imagine it won't happen now.
Maybe there is just so much actually happening in my head and my heart about it all right now, that there really is nothing left to come out at night.
Whatever the reason, I find it strange and puzzling. And I am grateful. Yes, grateful. I cry enough in the day, I appreciate the relief that sleep can still bring. Walking into a classroom of grade nines with no idea what I'm teaching almost a relief when it comes to nightmares. It sure could be much, much worse.
So, thank you God, for leaving me a sleep refuge. I need it!
Doctors
We've had so many great doctors, and I'm really grateful for them. Sometimes, though, you know that they just really don't get it. And it is hard... you can sort of see how you look through "their eyes," you know it's not really accurate, but you can't change it.
And there is a big difference between knowing something in your head, or knowing it in your heart. That gets said a lot. You get used to hearing it. But until it is YOU, getting the heart knowledge pounded in from where it was always in your head...
For example: denial. A stage of grief. And it is one of those things, that gets really frustrating when you are dealing with the docs.
Lots of times it really feels like they are assuming you are in denial. For instance, when they KEEP ON stressing to you how one day your son may have breathing problems that they can't fix. No matter how many times you acknowledge this to them, as long as you are still asking them to treat your child, they are still going to keep saying it. Because if there is one thing you can't deny, it's denial. Like that famous question "When did you stop beating your wife?"
You can't win, until you are telling them to let your child die. And as long as you believe that today is not that day, they are going to assume that you can't accept your child is dying and they are going to keep reminding you. Even though it is apparent that today really IS NOT that day.
That gets pretty frustrating. Believe me. I do understand that whenever Joel dies, it is going to be a shock. Yes, a shock. That is just how life is. And no matter how many times I say it or a doctor says it, death is a shock. It can't be avoided. So I really wish the doctors could realize that as much as is humanly possible, I have come to grips with Joel's death. And there really isn't any more that is humanly possible for me, until Joel is actually gone. At this stage I truly can't move any further into acceptance.
Of course, then there are the times where I am not looking at them clear eyed without a quiver in my voice and acknowledging that the disease is fatal. There are the times when I am telling them for the first time that we don't want them to restart Joel's heart, and then I am crying. Then my emotions are just barely under control. You'd think they'd find this reassuring. Isn't this how acceptance would look?
And then it always the same silly question. Oh, I know they HAVE to ask. Just like they have to keep "preparing me" for Joel's death. So they ask "Are you ok?" I understand they have to ask that.
But really, was there ever such a silly question?? My baby is dying, of course I'm NOT ok. If by ok you mean that I feel great, everything is hunky dorey and under control. How could I be ok? Are you asking if I am going to have a nervous breakdown? Really, you are the doctor. Can't you tell? Or how am I supposed to know that better than you do?? Anyone who knows me well, knows that I cry A LOT and so far, (cautiously said) no nervous breakdown.
As if tears were any sort of sign that you are NOT alright, and clear-eyed statements about Joel are some sort of sign that you are in denial. Isn't crying a logical reaction to this sort of stuff? Wouldn't someone who NEVER cried be a bit scarier? And if you have come to some sort of internal reckoning, can't you be calm and still speaking of a future, even when you know it will be short?
Well, they try. And they mean well. They just don't understand how sometimes they make me feel more uncomfortable about being "emotional" around them. Or how sometimes their efforts to help me realize my son could die soon are like having your face washed with steel wool. Instead of being helpful, it starts to feel unnecessarily cruel.
There are sometimes doctors who do seem to have a glimmering of understanding about it all. Precious people, they are.
I wrote to one of these doctors awhile back. I was asking him for information on a study that he was a part of. This study showed that DHA treatments did not seem to help PBD kids. There is a lot of controversy surrounding this treatment. I was going to put the information up on our group site.
I know this good doctor does not believe that DHA will help our children. But I think he was loathe to give me the info for the purpose of posting it on the group site. Because the DHA can't do any harm. And as he said "Wanting something for our children is a very powerful thing." In that statement, I thought, he really showed he got it.
Because I think he understood that DHA treatments help us parents, even if they do not do much for our children. I think he understood some of the frustration and helplessness we feel. And how grindingly wearying it is to have hope constantly snatched from you.
Feeling like you are doing something to help your child restores some strength to you. Being able to keep hoping despite the odds is that little feathered thing that sits and sings in your soul, as the poet says. It does live on the smallest of crumbs. And it does cheer you through the dark times. I wish more doctors could understand this.
I appreciate the compassion they show. I do appreciate how they try to "keep it real," with regard to Joel's prognosis.
But I can't help but wonder how many of them have gone through this kind of loss, and wish that more of them could really understand a bit better how we must constantly battle to understand and accept what is happening to our child, while at the same time we must keep some small hope for future bright times, however brief.
And there is a big difference between knowing something in your head, or knowing it in your heart. That gets said a lot. You get used to hearing it. But until it is YOU, getting the heart knowledge pounded in from where it was always in your head...
For example: denial. A stage of grief. And it is one of those things, that gets really frustrating when you are dealing with the docs.
Lots of times it really feels like they are assuming you are in denial. For instance, when they KEEP ON stressing to you how one day your son may have breathing problems that they can't fix. No matter how many times you acknowledge this to them, as long as you are still asking them to treat your child, they are still going to keep saying it. Because if there is one thing you can't deny, it's denial. Like that famous question "When did you stop beating your wife?"
You can't win, until you are telling them to let your child die. And as long as you believe that today is not that day, they are going to assume that you can't accept your child is dying and they are going to keep reminding you. Even though it is apparent that today really IS NOT that day.
That gets pretty frustrating. Believe me. I do understand that whenever Joel dies, it is going to be a shock. Yes, a shock. That is just how life is. And no matter how many times I say it or a doctor says it, death is a shock. It can't be avoided. So I really wish the doctors could realize that as much as is humanly possible, I have come to grips with Joel's death. And there really isn't any more that is humanly possible for me, until Joel is actually gone. At this stage I truly can't move any further into acceptance.
Of course, then there are the times where I am not looking at them clear eyed without a quiver in my voice and acknowledging that the disease is fatal. There are the times when I am telling them for the first time that we don't want them to restart Joel's heart, and then I am crying. Then my emotions are just barely under control. You'd think they'd find this reassuring. Isn't this how acceptance would look?
And then it always the same silly question. Oh, I know they HAVE to ask. Just like they have to keep "preparing me" for Joel's death. So they ask "Are you ok?" I understand they have to ask that.
But really, was there ever such a silly question?? My baby is dying, of course I'm NOT ok. If by ok you mean that I feel great, everything is hunky dorey and under control. How could I be ok? Are you asking if I am going to have a nervous breakdown? Really, you are the doctor. Can't you tell? Or how am I supposed to know that better than you do?? Anyone who knows me well, knows that I cry A LOT and so far, (cautiously said) no nervous breakdown.
As if tears were any sort of sign that you are NOT alright, and clear-eyed statements about Joel are some sort of sign that you are in denial. Isn't crying a logical reaction to this sort of stuff? Wouldn't someone who NEVER cried be a bit scarier? And if you have come to some sort of internal reckoning, can't you be calm and still speaking of a future, even when you know it will be short?
Well, they try. And they mean well. They just don't understand how sometimes they make me feel more uncomfortable about being "emotional" around them. Or how sometimes their efforts to help me realize my son could die soon are like having your face washed with steel wool. Instead of being helpful, it starts to feel unnecessarily cruel.
There are sometimes doctors who do seem to have a glimmering of understanding about it all. Precious people, they are.
I wrote to one of these doctors awhile back. I was asking him for information on a study that he was a part of. This study showed that DHA treatments did not seem to help PBD kids. There is a lot of controversy surrounding this treatment. I was going to put the information up on our group site.
I know this good doctor does not believe that DHA will help our children. But I think he was loathe to give me the info for the purpose of posting it on the group site. Because the DHA can't do any harm. And as he said "Wanting something for our children is a very powerful thing." In that statement, I thought, he really showed he got it.
Because I think he understood that DHA treatments help us parents, even if they do not do much for our children. I think he understood some of the frustration and helplessness we feel. And how grindingly wearying it is to have hope constantly snatched from you.
Feeling like you are doing something to help your child restores some strength to you. Being able to keep hoping despite the odds is that little feathered thing that sits and sings in your soul, as the poet says. It does live on the smallest of crumbs. And it does cheer you through the dark times. I wish more doctors could understand this.
I appreciate the compassion they show. I do appreciate how they try to "keep it real," with regard to Joel's prognosis.
But I can't help but wonder how many of them have gone through this kind of loss, and wish that more of them could really understand a bit better how we must constantly battle to understand and accept what is happening to our child, while at the same time we must keep some small hope for future bright times, however brief.
Friday, April 9, 2010
Marys and Marthas
This last year with my sick boy has taught me a lot about friends.
For a long time now, I have longed for a "best" girl friend. Someone to come over once or twice a week and gab with. Mostly a person to get deep with. To sit and laugh and cry.
A friend who will be there, in the flesh, while I grieve and mourn for Joel and all that has happened to us this past year. And for the future we will lose.
A "Mary" sort of friend. Like in the story of Jesus. Where the two women who are sisters are entertaining Jesus. And Mary sits at Jesus' feet. She is just content to be with him and listen. And Martha scurries around preparing a nice meal and grumbling at Mary for doing nothing. When she finally asks Jesus in exasperation to tell Mary to come and help her, Jesus tells her that Mary choose the better thing. Proving that Jesus didn't think that a woman's only place was in the kitchen. And also that what is most important to God isn't what we do, but our relationship to Him.
In any case, I was sad about this for a long time. I really wanted a "Mary" kind of friend, who would just be there while I did my "grief work." Someone to just sit with me. And it seemed like I mostly had "Martha" sort of people in my life.
They all wanted to "do" something. Make a meal, babysit, offer a ride somewhere. Don't get me wrong, I needed that too, and I sure did appreciate it. Especially the babysitting. But I wanted a Mary friend. Martha's are great, but I was lonely...
Well, here is to all the Martha's out there. Because I have started to learn to finally "hear" you. It has taken me awhile. But now I know what you are saying to me, when you bring over a meal. Or babysit. Or give me a ride. I hear your words.
The words that wrap up the casserole. "I wish I could make this better, but I don't know how. I don't have any words to say, they all seem wrong. I really care so much, and this is the only way I know how to show that. You are not alone. This is a casserole, but all my love is wrapped around it."
I can hear your words now. And now I simply accept, with gratitude. And when I accept, with out protestations, with a smile, I'm saying "Thanks for your love. I know you are being the best friend you can be. Your love wrapped around this casserole comforts me, because I know that you care, and I'm not alone."
It is great to have a "Mary" sort of friend. But I see now that "Martha's" are pretty great too. So, to all my friends, whichever kind you are, thank you. Your love is much appreciated, whichever way you find to show it.
For a long time now, I have longed for a "best" girl friend. Someone to come over once or twice a week and gab with. Mostly a person to get deep with. To sit and laugh and cry.
A friend who will be there, in the flesh, while I grieve and mourn for Joel and all that has happened to us this past year. And for the future we will lose.
A "Mary" sort of friend. Like in the story of Jesus. Where the two women who are sisters are entertaining Jesus. And Mary sits at Jesus' feet. She is just content to be with him and listen. And Martha scurries around preparing a nice meal and grumbling at Mary for doing nothing. When she finally asks Jesus in exasperation to tell Mary to come and help her, Jesus tells her that Mary choose the better thing. Proving that Jesus didn't think that a woman's only place was in the kitchen. And also that what is most important to God isn't what we do, but our relationship to Him.
In any case, I was sad about this for a long time. I really wanted a "Mary" kind of friend, who would just be there while I did my "grief work." Someone to just sit with me. And it seemed like I mostly had "Martha" sort of people in my life.
They all wanted to "do" something. Make a meal, babysit, offer a ride somewhere. Don't get me wrong, I needed that too, and I sure did appreciate it. Especially the babysitting. But I wanted a Mary friend. Martha's are great, but I was lonely...
Well, here is to all the Martha's out there. Because I have started to learn to finally "hear" you. It has taken me awhile. But now I know what you are saying to me, when you bring over a meal. Or babysit. Or give me a ride. I hear your words.
The words that wrap up the casserole. "I wish I could make this better, but I don't know how. I don't have any words to say, they all seem wrong. I really care so much, and this is the only way I know how to show that. You are not alone. This is a casserole, but all my love is wrapped around it."
I can hear your words now. And now I simply accept, with gratitude. And when I accept, with out protestations, with a smile, I'm saying "Thanks for your love. I know you are being the best friend you can be. Your love wrapped around this casserole comforts me, because I know that you care, and I'm not alone."
It is great to have a "Mary" sort of friend. But I see now that "Martha's" are pretty great too. So, to all my friends, whichever kind you are, thank you. Your love is much appreciated, whichever way you find to show it.
Sunday, April 4, 2010
Merry Easter Christmas
Well, this year Christmas and Easter finally met at my house. Yup, you got it. I STILL have some Christmas decorations up. Keep meaning to take them down, but never seem to get the right time to dig the boxes back out of the basement and deal with it.
But, maybe that is not such a bad thing. I mean, really they are part of the same story. I think it is sort of strange how Christmas is the celebration that really got tied to all the peace on earth and good will to men, and Easter sort of gets, well, second skimmings sometimes.
I mean, of course NOW it makes sense, as our civilization slowly strips off the religious meanings to the holidays. Christmas always was the big one, so it can just be called Winter Holiday or whatever and all the lovely hype and smushy feelings are already affixed to it.
But how did it EVOLVE that way. I mean, I totally get it that babies are cute and adorable. And dusty itinerant preachers with claims to be God who end up in a horrible and ignominious death... well, that DOES seem a bit emotionally confusing as a celebration. And a celebration is more fun to, well, celebrate.
Still, that is just a surface glance. And all the generations of people who slowly built up these two celebrations... were they not aware of the pertinent facts? I mean, yeah, there is a death at Easter, and yeah, a birth is definitely more likely to occasion a party, but whoa --- WHAT ABOUT THE RESURRECTION??
I mean, Jesus totally beat out death. Not just death, but EVIL. I'm talking about our death and the evil that lurks inside us. Come on, that is the two WORST things in our existence. The fact that we can not get rid of the evil part of our nature, the one that twists us up. The part of us that not only does wrong, but wants to do what is wrong. The part of us that can not co-exist with a supreme being who is all knowing, just, and completely good. Jesus made the way for us to be able to reunite with God on a permanent basis.
Now I hope I haven't lost any of my readers. The few good friends who do actually read this, sometimes likely more as a favour to me, than out of any real enjoyment. I mean, I realize that it is all about Easter and Jesus and stuff, and I haven't mentioned Joel or what is happening in my life at all.
So let me tell you. The last two weeks things have not been going as well with Joel, as you could tell from my blogs about emergency rooms and DNR's. And yes, today I did make a point to let the doctor know about our choice about restarting Joel's heart. And no, I don't think Joel is going to die in the next few days or even maybe months, though in all honesty, I don't expect he is going to live more than a year or two more. It would surprise me to celebrate a third birthday.
It is not the whole apnea, tonsil, adenoids thing that really is the worry. That has only a surface connection to his actual condition.
It is the fact that we keep upping the seizure meds and then we still have to up them some more. That, coupled with the fact that he just doesn't really seem to be making any gains. That he can not hold his head and does not play with toys. That sort of thing. He is still ok, he is still a happy little boy who coos and laughs. He turns toward me for snuggles and away for playing.
But deep inside of me, I hear that clock ticking, ticking, ticking. And the seizures do frighten me. Yup. One of the well-meaning half truths I was told waaaaaay back when his brain and his EEG and all that came up was this: Joel was at risk for seizures, but don't worry, lots of kids have seizures and it's not that bad, it can be controlled with medication.
A half truth. SOME kids have the sort of seizures that can be controlled with medication, because their brains are stable. No new damage is happening up there, and things sort of equal out with meds with very little or very gradual changes over the years.
But as I found out later, some kids have the sort of seizures that indicate that things are NOT stable in their brains. Things are getting worse, and as they worsen, so do the seizures. And sometimes it is a constant race to keep the seizure control one step ahead of the brain damage. If the damage is happening slowly, it works. If the damage is happening quickly, it soon is a bit of a losing battle.
That is why the fact that though Joel's seizures started off very sporadic, and brief, they still keep happening despite med increases, well, that does scare me. Right now we are still well ahead in this race. But the curve I am sensing frightens me. Every month or two they seem to worsen. The one scenario that I would like Joel to be spared, is the one where he ends up being one of the children who slowly seize more and more and more and more. For months, or even more than a year....
I know some children like this, and why Joel should be spared, when they and their parents have to go through this, well.... I wish I had a compelling reason for God, but I don't. I'm just sitting here hoping that it won't come to that for us.
So, I wrote about the Resurrection today. Yes. Because Easter is my favorite holiday. It is the best news I have ever had, and right now I just felt like some good news. I wanted to celebrate the fact that though I have no confidence about what sort of terrible things this disease might do to Joel and to our family before he dies, I have every confidence that in the end, the disease will not win. Christ is risen, indeed!!! (that's for you, Jen!)
SOOOOOO - Happy birth, death and resurrection of Jesus to you! Come over for some pretty lights, chocolate bunny, egg nog, evergreens, lilies, a wrapped gift and two kinds of carols!!!
But, maybe that is not such a bad thing. I mean, really they are part of the same story. I think it is sort of strange how Christmas is the celebration that really got tied to all the peace on earth and good will to men, and Easter sort of gets, well, second skimmings sometimes.
I mean, of course NOW it makes sense, as our civilization slowly strips off the religious meanings to the holidays. Christmas always was the big one, so it can just be called Winter Holiday or whatever and all the lovely hype and smushy feelings are already affixed to it.
But how did it EVOLVE that way. I mean, I totally get it that babies are cute and adorable. And dusty itinerant preachers with claims to be God who end up in a horrible and ignominious death... well, that DOES seem a bit emotionally confusing as a celebration. And a celebration is more fun to, well, celebrate.
Still, that is just a surface glance. And all the generations of people who slowly built up these two celebrations... were they not aware of the pertinent facts? I mean, yeah, there is a death at Easter, and yeah, a birth is definitely more likely to occasion a party, but whoa --- WHAT ABOUT THE RESURRECTION??
I mean, Jesus totally beat out death. Not just death, but EVIL. I'm talking about our death and the evil that lurks inside us. Come on, that is the two WORST things in our existence. The fact that we can not get rid of the evil part of our nature, the one that twists us up. The part of us that not only does wrong, but wants to do what is wrong. The part of us that can not co-exist with a supreme being who is all knowing, just, and completely good. Jesus made the way for us to be able to reunite with God on a permanent basis.
Now I hope I haven't lost any of my readers. The few good friends who do actually read this, sometimes likely more as a favour to me, than out of any real enjoyment. I mean, I realize that it is all about Easter and Jesus and stuff, and I haven't mentioned Joel or what is happening in my life at all.
So let me tell you. The last two weeks things have not been going as well with Joel, as you could tell from my blogs about emergency rooms and DNR's. And yes, today I did make a point to let the doctor know about our choice about restarting Joel's heart. And no, I don't think Joel is going to die in the next few days or even maybe months, though in all honesty, I don't expect he is going to live more than a year or two more. It would surprise me to celebrate a third birthday.
It is not the whole apnea, tonsil, adenoids thing that really is the worry. That has only a surface connection to his actual condition.
It is the fact that we keep upping the seizure meds and then we still have to up them some more. That, coupled with the fact that he just doesn't really seem to be making any gains. That he can not hold his head and does not play with toys. That sort of thing. He is still ok, he is still a happy little boy who coos and laughs. He turns toward me for snuggles and away for playing.
But deep inside of me, I hear that clock ticking, ticking, ticking. And the seizures do frighten me. Yup. One of the well-meaning half truths I was told waaaaaay back when his brain and his EEG and all that came up was this: Joel was at risk for seizures, but don't worry, lots of kids have seizures and it's not that bad, it can be controlled with medication.
A half truth. SOME kids have the sort of seizures that can be controlled with medication, because their brains are stable. No new damage is happening up there, and things sort of equal out with meds with very little or very gradual changes over the years.
But as I found out later, some kids have the sort of seizures that indicate that things are NOT stable in their brains. Things are getting worse, and as they worsen, so do the seizures. And sometimes it is a constant race to keep the seizure control one step ahead of the brain damage. If the damage is happening slowly, it works. If the damage is happening quickly, it soon is a bit of a losing battle.
That is why the fact that though Joel's seizures started off very sporadic, and brief, they still keep happening despite med increases, well, that does scare me. Right now we are still well ahead in this race. But the curve I am sensing frightens me. Every month or two they seem to worsen. The one scenario that I would like Joel to be spared, is the one where he ends up being one of the children who slowly seize more and more and more and more. For months, or even more than a year....
I know some children like this, and why Joel should be spared, when they and their parents have to go through this, well.... I wish I had a compelling reason for God, but I don't. I'm just sitting here hoping that it won't come to that for us.
So, I wrote about the Resurrection today. Yes. Because Easter is my favorite holiday. It is the best news I have ever had, and right now I just felt like some good news. I wanted to celebrate the fact that though I have no confidence about what sort of terrible things this disease might do to Joel and to our family before he dies, I have every confidence that in the end, the disease will not win. Christ is risen, indeed!!! (that's for you, Jen!)
SOOOOOO - Happy birth, death and resurrection of Jesus to you! Come over for some pretty lights, chocolate bunny, egg nog, evergreens, lilies, a wrapped gift and two kinds of carols!!!
Saturday, April 3, 2010
P.S. on DNR's
Well, in case I forgot I was human, and make lots of mistakes, I find I must correct two things in my last blog.
First of all, as my husband pointed out with exasperation (as he had told me the story many times and I still got it wrong, so he made me read it in his history book) I made a mistake in my story about the abbot. I had to go back and correct it. It was NOT Muslims he was fighting. It was Cathars. Cathars were a break off sect of Catholicism and were considered heretics. It doesn't in any way change the point I was making. But now it is historically correct, and please forgive my laxness in not double checking my facts. :)
Second, and more important, as I thought about my blog I started to feel very worried. Terrible, in fact. I was worried that someone who read it had already made some choices regarding DNR's that were different from mine. I felt terrible thinking that these persons unknown would think I was in any way criticising them.
Let me clarify: Each person is different in their story. So, of course, I understand that what is true for one is not always true for another. If my husband suffered a heart attack, I'd have them restart his heart!! There may come a time where putting Joel on a ventilator does not seem to be respecting and protecting his life, but rather just prolonging a difficult and painful end.
So please understand that I am in no way trying to make a blanket statement of what is right or wrong for anyone else in their situation. I was just explaining the principles that helped me to make a very difficult choice. And as you can read, it was so difficult for me that though I made the choice in my heart, I have not yet been able to articulate it!
First of all, as my husband pointed out with exasperation (as he had told me the story many times and I still got it wrong, so he made me read it in his history book) I made a mistake in my story about the abbot. I had to go back and correct it. It was NOT Muslims he was fighting. It was Cathars. Cathars were a break off sect of Catholicism and were considered heretics. It doesn't in any way change the point I was making. But now it is historically correct, and please forgive my laxness in not double checking my facts. :)
Second, and more important, as I thought about my blog I started to feel very worried. Terrible, in fact. I was worried that someone who read it had already made some choices regarding DNR's that were different from mine. I felt terrible thinking that these persons unknown would think I was in any way criticising them.
Let me clarify: Each person is different in their story. So, of course, I understand that what is true for one is not always true for another. If my husband suffered a heart attack, I'd have them restart his heart!! There may come a time where putting Joel on a ventilator does not seem to be respecting and protecting his life, but rather just prolonging a difficult and painful end.
So please understand that I am in no way trying to make a blanket statement of what is right or wrong for anyone else in their situation. I was just explaining the principles that helped me to make a very difficult choice. And as you can read, it was so difficult for me that though I made the choice in my heart, I have not yet been able to articulate it!
Easter and DNR's
I have had so many "mini" blogs kicking around in my mind, just waiting for me to write 'em out and fill 'em in. Now I sit down and find they have all fled!
So, I'm just going to wander a bit here, be experimental, and see what comes out.
Joel is in the hospital again tonight, and I am here at home. Something I feel guilty about every time I do it. Especially today, as he so clearly was trying his best to keep himself in my arms, and therefore safe from being left in such a terrible place. It is the first time that I have seen this behavior.
He hardly slept for the 8 hours I was there, he just had little "snippets" in my arms, and if I put him down, he woke up. He would stay in the crib for a short while but if I left his side he would shortly start to fuss until I picked him up. Poor little mite! I think he figured that as long as I was holding him he had a chance of going home.
And today when I came in, for the first hour or two he was practically giddy. Just so smiley and happy. Sure I was taking him home, no doubt. It is always hard to leave him there, but today even more so. I just wanted to cuddle him up in my arms and never let him go.
So I hope he can come home tomorrow. I hope that tonight his oxygen levels again stay up. I want him home. Soon. Even one day in the hospital is one day too many wasted!
Though I know sometimes it must be done for him to be well and safe. And I really can't live at the hospital every time he is in there. I need sleep, Caeden needs a mommy too, and there are things waiting at home. And really, we are so lucky that I don't have to work, and can spend an 8 hour day there with him.
Today I was planning on telling the nurses our DNR plan. Steve and I decided that right now, we want them to do everything they can BUT NOT try to restart his heart if it stops. That is the one thing that I just feel will be little use in Joel's case, and if his heart has already stopped, who am I trying to bring him back for?? Not him. Just me.
The thought of them crushing his tiny little ribs, bruising him, or shocking him... it just doesn't seem right when he is already on his way home. I mean, as long as his heart beats, it feels like he might be trying to live. And if he is struggling to breathe, if his little heart is still working at it, then I'm going to help him, if I can. But when his heart stops?? The thought of the violence needed to try to force his life to go on, it just doesn't seem like I'm doing it for him, but like I just can't let go.
Yet, I found I could not say the words. I opened my mouth several times. But I just couldn't say the words. I really feel, down inside, like it is the one thing I feel they should refrain from, in Joel's own interests. But though I feel this, I could not say it. Not today. It felt like giving him permission to die, or something. Not logical. Like I was giving up my right to keep my boy with me, like I ever really have any control on that anyway...
But one of the great things about what I believe is this: life "here" is greatly valued and protected, and also life "here" is not the end, so I don't need to fear death.
(but I just would like to state for the record that I DO NOT believe what I do BECAUSE I like it. I believe it because I am convinced that it is TRUE)
It is easy to forget one of these two things. So sometimes I hear people who say they believe in Jesus say things that makes it sound like what they believe the afterlife to be is more like the ancient Greek view. Like it is a misty sort of existence where all the real "fun" was had in the earthy existence and the life after is somehow less real, less meaningful. Not that they would ever express it this way. Just the subtle way they speak, or even more so by their actions... In fact, I'm pretty sure I sometimes do the same thing. Joel has challenged me in this. He has made me really sit down and think about what I believe happens when we die.
So when Paul says to be absent in the body is to be present with the Lord, yeah, I believe that. And the Lord he is speaking of is Jesus. In fact, this is what Paul says "For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that MORTALITY MAY BE SWALLOWED UP BY LIFE." 2Cor. 5:4 In other words, in our struggles here we long for more, not that we will shed our physical bodies and be spirits, but that one day we will be further clothed, in immortal physical form. Yup, seriously people, the Bible teaches this, read it and you will see. Sure, maybe you already know this. But THINK about it!! Whoa!
So I don't have to worry, or be sad when Joel sheds his broken little body here. Yes, I love that little body, for it contains the spirit of my precious boy. But I don't have to feel that I must preserve it at any cost, like it is all Joel has. Cause one day he is going to get the most awesome body to wear, that makes this one seem like less than a worn out rag. Wow, God. What a gift!
But on the flip side of it all, I know that God still values our lives here. So they are to be protected and respected no matter what physical form they take. There was an abbot (Arnaud Amaury) back in medieval times who was fighting Cathars (a Christian sect). His men came to a town full of both Cathars and Catholics. His men asked what they should do, as they couldn't tell who were the Catholics and who were the Cathars. So the Abbot said "God will know his own" and both Catholics and Cathars were killed together. Now where to start on THAT quote!! That is really not sound theology, for more than one reason.
But the one I'm going to comment on is that though through Christ we have immortal life, in no way are we to spurn or cut off our own life here, nor anyone else's. Christianity has been criticised as being the "opiate of the masses" because it was supposedly making Christians apathetic about life on earth. If people die, no big deal as God will sort it all out later. I truly wonder how much of the Bible the abbot had actually read.
What I have read tells me that life is sacred to God, that He does not judge by appearances, but loves the spirit within us. Jesus died so we could have eternal life, but he also fed the hungry and healed the sick. And he wept over the physical and spiritual suffering of the people around him. Our lives here are precious to HIM. Therefore how we treat the physical aspect of the people around us matters to HIM. It is not ok to let people go hungry, or be cold, or hurt in any way.
So, when it comes to Joel, and to DNR's and all those hard decisions, I find that what I believe offers me two guidelines. First of all, that Joel's life is precious, that I must be very careful about deciding what "quality of life" is worth sustaining, for God Himself has given Joel's precious life to me to guard and care for.
And I must not grasp desperately at Joel's life in his body, I must not hold on to it as though it were the only thing we have. When Joel's time is done, I can let him go, with love, and sorrow and hope. Because this is not the end. I will see Joel again.
So, maybe I will try to tell the nurses again tomorrow. I'll think I will find the courage soon. I'm learning what it means to protect and value my little boy's life. And what it means to trust and hope in God's promise, so when the time comes, I can let him go.
So, I'm just going to wander a bit here, be experimental, and see what comes out.
Joel is in the hospital again tonight, and I am here at home. Something I feel guilty about every time I do it. Especially today, as he so clearly was trying his best to keep himself in my arms, and therefore safe from being left in such a terrible place. It is the first time that I have seen this behavior.
He hardly slept for the 8 hours I was there, he just had little "snippets" in my arms, and if I put him down, he woke up. He would stay in the crib for a short while but if I left his side he would shortly start to fuss until I picked him up. Poor little mite! I think he figured that as long as I was holding him he had a chance of going home.
And today when I came in, for the first hour or two he was practically giddy. Just so smiley and happy. Sure I was taking him home, no doubt. It is always hard to leave him there, but today even more so. I just wanted to cuddle him up in my arms and never let him go.
So I hope he can come home tomorrow. I hope that tonight his oxygen levels again stay up. I want him home. Soon. Even one day in the hospital is one day too many wasted!
Though I know sometimes it must be done for him to be well and safe. And I really can't live at the hospital every time he is in there. I need sleep, Caeden needs a mommy too, and there are things waiting at home. And really, we are so lucky that I don't have to work, and can spend an 8 hour day there with him.
Today I was planning on telling the nurses our DNR plan. Steve and I decided that right now, we want them to do everything they can BUT NOT try to restart his heart if it stops. That is the one thing that I just feel will be little use in Joel's case, and if his heart has already stopped, who am I trying to bring him back for?? Not him. Just me.
The thought of them crushing his tiny little ribs, bruising him, or shocking him... it just doesn't seem right when he is already on his way home. I mean, as long as his heart beats, it feels like he might be trying to live. And if he is struggling to breathe, if his little heart is still working at it, then I'm going to help him, if I can. But when his heart stops?? The thought of the violence needed to try to force his life to go on, it just doesn't seem like I'm doing it for him, but like I just can't let go.
Yet, I found I could not say the words. I opened my mouth several times. But I just couldn't say the words. I really feel, down inside, like it is the one thing I feel they should refrain from, in Joel's own interests. But though I feel this, I could not say it. Not today. It felt like giving him permission to die, or something. Not logical. Like I was giving up my right to keep my boy with me, like I ever really have any control on that anyway...
But one of the great things about what I believe is this: life "here" is greatly valued and protected, and also life "here" is not the end, so I don't need to fear death.
(but I just would like to state for the record that I DO NOT believe what I do BECAUSE I like it. I believe it because I am convinced that it is TRUE)
It is easy to forget one of these two things. So sometimes I hear people who say they believe in Jesus say things that makes it sound like what they believe the afterlife to be is more like the ancient Greek view. Like it is a misty sort of existence where all the real "fun" was had in the earthy existence and the life after is somehow less real, less meaningful. Not that they would ever express it this way. Just the subtle way they speak, or even more so by their actions... In fact, I'm pretty sure I sometimes do the same thing. Joel has challenged me in this. He has made me really sit down and think about what I believe happens when we die.
So when Paul says to be absent in the body is to be present with the Lord, yeah, I believe that. And the Lord he is speaking of is Jesus. In fact, this is what Paul says "For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that MORTALITY MAY BE SWALLOWED UP BY LIFE." 2Cor. 5:4 In other words, in our struggles here we long for more, not that we will shed our physical bodies and be spirits, but that one day we will be further clothed, in immortal physical form. Yup, seriously people, the Bible teaches this, read it and you will see. Sure, maybe you already know this. But THINK about it!! Whoa!
So I don't have to worry, or be sad when Joel sheds his broken little body here. Yes, I love that little body, for it contains the spirit of my precious boy. But I don't have to feel that I must preserve it at any cost, like it is all Joel has. Cause one day he is going to get the most awesome body to wear, that makes this one seem like less than a worn out rag. Wow, God. What a gift!
But on the flip side of it all, I know that God still values our lives here. So they are to be protected and respected no matter what physical form they take. There was an abbot (Arnaud Amaury) back in medieval times who was fighting Cathars (a Christian sect). His men came to a town full of both Cathars and Catholics. His men asked what they should do, as they couldn't tell who were the Catholics and who were the Cathars. So the Abbot said "God will know his own" and both Catholics and Cathars were killed together. Now where to start on THAT quote!! That is really not sound theology, for more than one reason.
But the one I'm going to comment on is that though through Christ we have immortal life, in no way are we to spurn or cut off our own life here, nor anyone else's. Christianity has been criticised as being the "opiate of the masses" because it was supposedly making Christians apathetic about life on earth. If people die, no big deal as God will sort it all out later. I truly wonder how much of the Bible the abbot had actually read.
What I have read tells me that life is sacred to God, that He does not judge by appearances, but loves the spirit within us. Jesus died so we could have eternal life, but he also fed the hungry and healed the sick. And he wept over the physical and spiritual suffering of the people around him. Our lives here are precious to HIM. Therefore how we treat the physical aspect of the people around us matters to HIM. It is not ok to let people go hungry, or be cold, or hurt in any way.
So, when it comes to Joel, and to DNR's and all those hard decisions, I find that what I believe offers me two guidelines. First of all, that Joel's life is precious, that I must be very careful about deciding what "quality of life" is worth sustaining, for God Himself has given Joel's precious life to me to guard and care for.
And I must not grasp desperately at Joel's life in his body, I must not hold on to it as though it were the only thing we have. When Joel's time is done, I can let him go, with love, and sorrow and hope. Because this is not the end. I will see Joel again.
So, maybe I will try to tell the nurses again tomorrow. I'll think I will find the courage soon. I'm learning what it means to protect and value my little boy's life. And what it means to trust and hope in God's promise, so when the time comes, I can let him go.
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