This blog might be a bit of a ramble, and I hope you will pardon me for that. It is just that the what I am talking about has a lot of ambiguities for me, so I am not totally sure where it may take me.
I try not to get sucked in to too much introspection about myself, if possible, which is hard for me as I think I am a bit of a deep thinker (and modest too!). Dwelling on oneself does seem to lend itself to two opposite, but equally harmful directions. If you think about yourself in a positive way too much, you will find yourself proud. And if you dwell upon the negative, you will find yourself depressed and immobilized.
Not to mention that it often bores the heck out of other people. So, please forgive me. But sometimes I feel that I have "lost myself." Ugh. There is an expression that gets put to too much use, and here I am doing it myself.
Thing is, since Joel has come along, I feel like my whole life has been swallowed up, for good or for ill. I feel like most of my personality has been submerged by a title: Joel's Mother. Like that is my one defining aspect, the title that sums up my existence.
I mean, when we go to our frequent stops at the hospital for this or that, it's truly my name. I'm not introduced as "Karen Smith" very often. I hear "This is Joel's Mom." Or the nurse walks in and says "Are you "Mom?" To which I should perhaps reply "Well, certainly not YOURS." It is the only thing that matters here, to these people.
Sometimes it carries over other places too. Someone has told someone else about Joel, and I am referred to as "Joel's Mom."
It doesn't really bother me as I understand the utility of using the title. I mean, I AM Joel's mom.
But sometimes it feels much deeper than that. I feel that something has taken over my whole life, become its' whole driving focus. Perhaps like I myself am defining myself in this new life. As if every thing I discuss, everything I do, all my interests have become attached to this "world" of my PBD child.
I wonder if I bore people absolutely to death? Am I so obsessed with Joel and his health, his future, his care that people give that internal "Oh no, here we go again." when I start to speak? My poor parents who come to tea every week, and listen to nothing but Joel. Joel and his feedings, Joel and his cold, Joel and his liver, Joel and his physio. Or, perhaps worse, me. Me and my support group, me and my fears, me and my grief... Me and my blog!! Ha ha ha ha.
Sometimes, after I have finished explaining something about the world of PBD, I find my mind blank. I cast about for some other topic, and find.......... nothing. "What has happened to me," I think. Parts of me have just wasted away, or been choked out.
Here is the conundrum. I need to be able to talk about Joel, about my grief, about the whole nine yards of it, AND I need to talk about something else, I need to hear about other peoples' lives, I need to discuss ideas and events unrelated to myself!!
A wise friend who can understand this is priceless. Someone who will listen with patience, maybe even interest, as I go on and on about what I am going through. And someone who will bring up other topics, and jump in and share their own life and troubles with me. It is what I need, and it is good for me.
On the other hand, I really hate it when people are afraid to share their own sorrows and troubles because mine are "so much worse." Firstly, who wants to be known as the "Job" (as in biblical man of ultimate suffering) of the neighbourhood?? Not me. Secondly, it really isn't good for me to become locked up in my own suffering.
I promise not to minimize your troubles just because of mine. Ok, truly, if you are very upset because you ordered a blueberry muffin and got a bran muffin instead, I might laugh or take a poke at you. But I would have done that BEFORE Joel too. I won't think, in my mind, when your child is struggling in school, "Ha! My child might not even get to school." Ok, honestly, I might think that, cause I am human, but I promise you that I won't let an unkind thought like that dwell in my mind for long. My problems do not make yours any less, please give me the credit to understand this. I do want to be a friend and get out of my own self pity too!!
I don't want to be swallowed whole by this, swallowed up alive. I don't want to be a plant choked off by this weed until I am all scraggly stems with blighted leaves. I want to have flowers too! I want to be a person with interests and thoughts that go beyond just this one driving part of my life. I want to be developed, and broadened out and whole. Yes, that is it. I want to have flowers again, in my mind and heart.
So, my dear friends, I ask you to try your best. First: listen. Second: talk. About yourself. And anything else that interests you. And I will try to follow along. Maybe in time, there will be buds again...
Friday, January 29, 2010
Tuesday, January 26, 2010
Loss List
I haven't had much time to write lately, but I have respite this afternoon. It certainly is not that I don't have something to say, as sometimes the real difficulty lies in choosing which of many topics to go with.
This is one that I have been telling myself I'd write, oh, just about since I started the blog. It is a tough one though. So we will see. Right now I feel "strong", not like I will dissolve into tears, but this topic may undo me. And my poor respite worker will wonder at the strange noises emanating from the direction of the computer, but we will see. We will see. I promised myself anyway, and sooner or later I gotta keep the promise.
Don't read this if it is going to distress you. As the title suggests (if you notice the title), this one is my "loss list." It is sort of the opposite of "count your blessings," to be sure. I'm listing all the things that I am losing because of Joel's illness.
Some may feel that it is absolutely terrible to actually LIST things like that, and be offended that I would do the opposite of being positive and counting all I have. Well, sorry to offend you, but this is (strange I know) good for me. And don't worry. Another time I WILL write out all the good things in my life. I know they are many.
In fact, you may once again, if you can remember far enough back in my blog, find me contradictory. As I have previously written how my love for Joel has "shrunk" my feelings about my own losses from this disease. I've said it once and I will say it again, that is grief for you. On one hand, my love for Joel as he is, has lessened my own sadness and suffering through it all. On the other hand, I have lost so much and I somehow need to let you, and myself, acknowledge it.
And please don't do me the disservice of thinking that just because I have Caeden, my sorrow over what I have lost for Joel is somehow going to be less. That since I have experienced all these things once, it lessens my pain. Yes, I am grateful for Caeden. But we want what we want, the good things, for all our children. Each one is special. Each one is unique. And so I must still grieve these things FOR JOEL. Because Joel is special and unique.
If your life has only healthy children, then think of my loss list as your ultimate "count your blessings" list about your own children. I am sure you will be surprised at some of the things on my list. I was surprised when I was pained at loosing them... lots of things I had never thought of with Caeden. In fact, this list might get too long for one blog. We will see.
So, here we go. Listed in no particular order of importance and not chronological either.
My little boy will never see my face. He can not understand my smile and subtle grasp of expression is beyond him.
We will never do "tooth fairy" when he loses his teeth. He'll never look under a pillow with excitement for the money there.
In fact, he'll never have a piggy bank at all. He'll never sit in a shopping cart and whine for toys.
He'll never run with that little "pitter patter", that toddling, teetering, giggly run of a small child.
Presents of any kind, birthday, Christmas, whatever, will likely never have meaning for him. His interest in toys is small and selective, he can't rip off paper and right now has no interest in crumpling it. This makes birthdays very difficult for me.
There will be no license, no excitement about first time driving, no begging for the car, no getting dents and being afraid to tell us.
No first time at the theatre to see a cartoon, no excitement over the popcorn and the darkness.
I'll never get to have a late night spontaneous talk, or any "talk". I will never find out the more subtle nuances of his personality. There will not be any teen age sulks, or attitude. I'll never have a talk about love and responsibility.
I'll never see any crushes, whether tiny or tall. He'll never chase little girls around the park, or try hold hands when he has his first crush.
We will never share a favorite story. Or a joke.
There won't be any excitement about a first bike, or getting training wheels taken off.
I will never get a Mother's Day gift that he made himself just for me. I will never put up on the fridge the scribbly paper with the broccoli trees and circular sun that says "I lov yu mom."
I will never check for monsters under the bed or in the closet.
I'll never brag to another mom about the cute things he said. Or the "A" he got in school.
Or go to see him in the school play, or hear him play in the band.
We will never argue about how he promised if we paid for lessons, he'd practice the guitar. Or about how he doesn't pick up his room, or do his chores.
He'll never beg for a pet of any kind, nor will his goldfish die because he forgot to feed it.
There won't be any staring over the back of the pew at the people behind us in church.
We will never sing a song together.
He won't ask for his favorite disney character on his shoes, his lunch box, or his pjs.
There won't be any engagement, any wedding or any grandchildren.
He will never beg for one more time down the slide, or sit in a heap and cry when we have to leave the park.
Words I will never hear from him: "That's not fair", "I promise", "Why", "Please, please, please", "Your the best mom ever", "I love you"
My talks with the nursery teacher, kindergarten teacher, grade school teacher, all will be very, very different...
He'll never ask for his friends to come over for dinner, or to sleep over at night in the tent in the backyard.
We won't go fishing or canoeing together.
Steve and I won't ever grumble that now that he's in university, we never see him, or that he only comes home to do laundry, or that he still lives at home despite all our hints.
We will never need to drive him to sports, or watch any games. Or tell him he needs to get off the couch and STOP playing his video game.
I don't even know if my son will ever be able to put his own arms around me and give me a squeeze, though I know that he loves me very much.
That is a fraction of my list, but I am tired now. Whew. These things "take it out of me" in a good way, but they are also very much exhausting.
If you are still with me, maybe you are realizing how many little joys our children give us every day. I hope you can perhaps understand why my grief can not be "over" in just months. With every stage and age, there are new losses to mourn. Each and every thing on the list is a sorrow. They come up unexpectedly to bite at my heart. The sudden realization of something that has been lost. Each one requires that mourning period, some long, some short.
It is not that I think myself the one who is so hard done by. When I write this list, others are always "with me", in my mind. Because it reminds me of all the losses of so many other people. Friends who have lost husbands, or dealt with serious illness. So many people for whom this list will almost feel "personal" because they too have lost or are losing their child. Not just PBD's. Cancer, accidents, disasters, the list goes on.
Let us remember that just about everyone has a "loss list." Let's be patient with them. Let's give them time to grieve. Let's make sure to call them, to visit and listen. Sensitive. Let's be sensitive to the spirit of others, so we can feel it when they are sad. Let's make sure to love them, because it is certain we brought nothing into this world, and it is certain we will take nothing out. God wants us to do the things that have lasting value. He wants us to demonstrate an active kind of love...
This is one that I have been telling myself I'd write, oh, just about since I started the blog. It is a tough one though. So we will see. Right now I feel "strong", not like I will dissolve into tears, but this topic may undo me. And my poor respite worker will wonder at the strange noises emanating from the direction of the computer, but we will see. We will see. I promised myself anyway, and sooner or later I gotta keep the promise.
Don't read this if it is going to distress you. As the title suggests (if you notice the title), this one is my "loss list." It is sort of the opposite of "count your blessings," to be sure. I'm listing all the things that I am losing because of Joel's illness.
Some may feel that it is absolutely terrible to actually LIST things like that, and be offended that I would do the opposite of being positive and counting all I have. Well, sorry to offend you, but this is (strange I know) good for me. And don't worry. Another time I WILL write out all the good things in my life. I know they are many.
In fact, you may once again, if you can remember far enough back in my blog, find me contradictory. As I have previously written how my love for Joel has "shrunk" my feelings about my own losses from this disease. I've said it once and I will say it again, that is grief for you. On one hand, my love for Joel as he is, has lessened my own sadness and suffering through it all. On the other hand, I have lost so much and I somehow need to let you, and myself, acknowledge it.
And please don't do me the disservice of thinking that just because I have Caeden, my sorrow over what I have lost for Joel is somehow going to be less. That since I have experienced all these things once, it lessens my pain. Yes, I am grateful for Caeden. But we want what we want, the good things, for all our children. Each one is special. Each one is unique. And so I must still grieve these things FOR JOEL. Because Joel is special and unique.
If your life has only healthy children, then think of my loss list as your ultimate "count your blessings" list about your own children. I am sure you will be surprised at some of the things on my list. I was surprised when I was pained at loosing them... lots of things I had never thought of with Caeden. In fact, this list might get too long for one blog. We will see.
So, here we go. Listed in no particular order of importance and not chronological either.
My little boy will never see my face. He can not understand my smile and subtle grasp of expression is beyond him.
We will never do "tooth fairy" when he loses his teeth. He'll never look under a pillow with excitement for the money there.
In fact, he'll never have a piggy bank at all. He'll never sit in a shopping cart and whine for toys.
He'll never run with that little "pitter patter", that toddling, teetering, giggly run of a small child.
Presents of any kind, birthday, Christmas, whatever, will likely never have meaning for him. His interest in toys is small and selective, he can't rip off paper and right now has no interest in crumpling it. This makes birthdays very difficult for me.
There will be no license, no excitement about first time driving, no begging for the car, no getting dents and being afraid to tell us.
No first time at the theatre to see a cartoon, no excitement over the popcorn and the darkness.
I'll never get to have a late night spontaneous talk, or any "talk". I will never find out the more subtle nuances of his personality. There will not be any teen age sulks, or attitude. I'll never have a talk about love and responsibility.
I'll never see any crushes, whether tiny or tall. He'll never chase little girls around the park, or try hold hands when he has his first crush.
We will never share a favorite story. Or a joke.
There won't be any excitement about a first bike, or getting training wheels taken off.
I will never get a Mother's Day gift that he made himself just for me. I will never put up on the fridge the scribbly paper with the broccoli trees and circular sun that says "I lov yu mom."
I will never check for monsters under the bed or in the closet.
I'll never brag to another mom about the cute things he said. Or the "A" he got in school.
Or go to see him in the school play, or hear him play in the band.
We will never argue about how he promised if we paid for lessons, he'd practice the guitar. Or about how he doesn't pick up his room, or do his chores.
He'll never beg for a pet of any kind, nor will his goldfish die because he forgot to feed it.
There won't be any staring over the back of the pew at the people behind us in church.
We will never sing a song together.
He won't ask for his favorite disney character on his shoes, his lunch box, or his pjs.
There won't be any engagement, any wedding or any grandchildren.
He will never beg for one more time down the slide, or sit in a heap and cry when we have to leave the park.
Words I will never hear from him: "That's not fair", "I promise", "Why", "Please, please, please", "Your the best mom ever", "I love you"
My talks with the nursery teacher, kindergarten teacher, grade school teacher, all will be very, very different...
He'll never ask for his friends to come over for dinner, or to sleep over at night in the tent in the backyard.
We won't go fishing or canoeing together.
Steve and I won't ever grumble that now that he's in university, we never see him, or that he only comes home to do laundry, or that he still lives at home despite all our hints.
We will never need to drive him to sports, or watch any games. Or tell him he needs to get off the couch and STOP playing his video game.
I don't even know if my son will ever be able to put his own arms around me and give me a squeeze, though I know that he loves me very much.
That is a fraction of my list, but I am tired now. Whew. These things "take it out of me" in a good way, but they are also very much exhausting.
If you are still with me, maybe you are realizing how many little joys our children give us every day. I hope you can perhaps understand why my grief can not be "over" in just months. With every stage and age, there are new losses to mourn. Each and every thing on the list is a sorrow. They come up unexpectedly to bite at my heart. The sudden realization of something that has been lost. Each one requires that mourning period, some long, some short.
It is not that I think myself the one who is so hard done by. When I write this list, others are always "with me", in my mind. Because it reminds me of all the losses of so many other people. Friends who have lost husbands, or dealt with serious illness. So many people for whom this list will almost feel "personal" because they too have lost or are losing their child. Not just PBD's. Cancer, accidents, disasters, the list goes on.
Let us remember that just about everyone has a "loss list." Let's be patient with them. Let's give them time to grieve. Let's make sure to call them, to visit and listen. Sensitive. Let's be sensitive to the spirit of others, so we can feel it when they are sad. Let's make sure to love them, because it is certain we brought nothing into this world, and it is certain we will take nothing out. God wants us to do the things that have lasting value. He wants us to demonstrate an active kind of love...
Tuesday, January 19, 2010
Handle it
I didn't want to write this blog, I was afraid that I might hurt some well meaning person, but now I really feel I must. Believe me when I say that I know that I myself am not perfect, and if we counted my verbal "screw ups" you'd have a whole cashier's ribbon roll of them. I just have to say this and no offense is meant. So please understand my heart when I let this all out. ....
(deep breath)
Please, everyone, go into the "drawers" of your mind and empty out all those musty, overused platitudes and expressions. You don't have to say anything to those of us who grieve, we just need you to listen. That is a much better gift than a stale, worn out expression.
And let me tell you which of those horrid "moldy oldies" in particular I am talking about...
This last Sunday a very kind and well meaning lady said to me "God won't give you anything you can't handle." I know she meant it well, and she had tears in her eyes. I was not angry at her, but the words really are like a classroom full of chalkboards and fingernails meeting in a jarring, jagged dance.
And truly, it is not just me. Funny co-incidence, a friend emailed me a day later about how she hates that expression, and she brought it up first. Among us mothers of dying children, I have heard it particularly mentioned a few times.
Let me explain to you why I personally find it not only dubious in its' veracity, but even hurtful to my heart. (yes, I know that it is not meant to be hurtful. I know that. But it still hurts)
I must question two parts of the proposition for accuracy. It seems to me to be very problematic to say that God "gave" Joel's illness to me. Or maybe I should say that if God wouldn't give me something I can't handle, He couldn't have given Joel this illness. It has to be one or the other!
Because I am sure that I can't handle this. In fact, you will find an auditorium of people in any major city who don't "handle" tragedies, unless your definition of handling something means that they end up on medication for depression or that they have a nervous breakdown, or they develop a myriad of health problems from the stress.
A wise pastor pointed out, in fact, that God doesn't EXPECT US to handle anything. He wants us to ask Him for help in handling these things. Do I think God will help me "handle" things? Yes, in the long run. That doesn't mean that I might not also need some meds for depression or sleep, some respite to get away and rest, a long soak in a very hot tub, maybe even a therapist or two and a large group of supportive and forgiving friends.
You see, the big problem for me is this: If you believe in God enough to SAY that, why don't you believe in Him enough to see that His way of helping me to handle it WAS TO SEND YOU!!!
When you tell me I can handle it, cause God said so, you just put all the burden back on me. If I fail, if it is too much for me to bear, it is my fault, for surely God wouldn't have "given" it to me if I couldn't do it. Do you see why this is hurtful??? It just means that when I am depressed, broken, or even hospitalized, I don't just feel the terrible grief, now I also feel guilt and failure cause I couldn't "handle" it. You meant well, but you only added a large stick to an already broken camel's back.
When I tell you my life is in shambles, when I say that things are so hard I want to quit, when there are tears in my eyes and tears in my voice:
I NEED TO HEAR THESE WORDS FROM YOU: "You will not be alone. God has given you my friendship, and I am here to help you handle all these terrible things that have come your way."
When we, the broken hearted, hear these words from you, life will seem a little more bearable. They are words of healing...
(deep breath)
Please, everyone, go into the "drawers" of your mind and empty out all those musty, overused platitudes and expressions. You don't have to say anything to those of us who grieve, we just need you to listen. That is a much better gift than a stale, worn out expression.
And let me tell you which of those horrid "moldy oldies" in particular I am talking about...
This last Sunday a very kind and well meaning lady said to me "God won't give you anything you can't handle." I know she meant it well, and she had tears in her eyes. I was not angry at her, but the words really are like a classroom full of chalkboards and fingernails meeting in a jarring, jagged dance.
And truly, it is not just me. Funny co-incidence, a friend emailed me a day later about how she hates that expression, and she brought it up first. Among us mothers of dying children, I have heard it particularly mentioned a few times.
Let me explain to you why I personally find it not only dubious in its' veracity, but even hurtful to my heart. (yes, I know that it is not meant to be hurtful. I know that. But it still hurts)
I must question two parts of the proposition for accuracy. It seems to me to be very problematic to say that God "gave" Joel's illness to me. Or maybe I should say that if God wouldn't give me something I can't handle, He couldn't have given Joel this illness. It has to be one or the other!
Because I am sure that I can't handle this. In fact, you will find an auditorium of people in any major city who don't "handle" tragedies, unless your definition of handling something means that they end up on medication for depression or that they have a nervous breakdown, or they develop a myriad of health problems from the stress.
A wise pastor pointed out, in fact, that God doesn't EXPECT US to handle anything. He wants us to ask Him for help in handling these things. Do I think God will help me "handle" things? Yes, in the long run. That doesn't mean that I might not also need some meds for depression or sleep, some respite to get away and rest, a long soak in a very hot tub, maybe even a therapist or two and a large group of supportive and forgiving friends.
You see, the big problem for me is this: If you believe in God enough to SAY that, why don't you believe in Him enough to see that His way of helping me to handle it WAS TO SEND YOU!!!
When you tell me I can handle it, cause God said so, you just put all the burden back on me. If I fail, if it is too much for me to bear, it is my fault, for surely God wouldn't have "given" it to me if I couldn't do it. Do you see why this is hurtful??? It just means that when I am depressed, broken, or even hospitalized, I don't just feel the terrible grief, now I also feel guilt and failure cause I couldn't "handle" it. You meant well, but you only added a large stick to an already broken camel's back.
When I tell you my life is in shambles, when I say that things are so hard I want to quit, when there are tears in my eyes and tears in my voice:
I NEED TO HEAR THESE WORDS FROM YOU: "You will not be alone. God has given you my friendship, and I am here to help you handle all these terrible things that have come your way."
When we, the broken hearted, hear these words from you, life will seem a little more bearable. They are words of healing...
Thursday, January 14, 2010
Presence
Whew. Last night was quite a night. I woke up exhausted and emotionally spent.
Let me back up a bit. A very good friend of mine had gotten me thinking. We were talking about God, about how a person could know His presence was real, and that it wasn't just an experience created by our own wishful thinking.
I often do think about these things, and she had gotten me thinking once again. You see, the funny thing is that so many people I know that have gone through some sort of awful experience have told me that God has felt so close to them, helping them through it all. Like God was close to them in a special way.
Of course, too, I have heard of people who felt the opposite, that God was distant as they were struggling.
In my own experience, for the most part, I have felt neither of these things particularly. Or to be more precise, at times God seems "closer" and at times He seems "farther away." Just like most of the other times of my life.
The "closer" times are great, and in the "farther away" times, faith can be put to the test. I have had to work through my faith many times in this way.
So, my friend had really gotten me thinking. Because through all that has happened, there have been times where what I believe has been tested. Mostly because, as I think of Joel dying, I am forced to really measure what I believe about life after death. If it was my own death, I think it might be easier.
But it is my boy that I am "allowing" to pass into that dark place we call death. It is one that I am bound to protect with my life. One that I would do anything to spare pain or suffering.
So I have many questions about death. Will he feel afraid? Will he feel himself "slipping away." What will this experience be like for him?
And, most importantly, can I really trust that this faith I have is not wishful thinking, and that my little boy will not merely be extinguished like a candle? That he will really and truly be passing on to a place that is full of light and love because God is there?
I have been reviewing some of the reasons I believe what I do.
And then last night I had one of those more rare occurrences where I REALLY felt God's presence. I mean, one of those strong experiences. I was thinking all day about why I was sure that God did exist and then I lay in bed and suddenly had one of those clear moments where I could just clearly see and believe it. I lay smiling in the dark because I KNEW that I wasn't just believing a fable. I felt this confidence that God was real as I thought through the logic of it, and as suddenly as the confidence had come over me while thinking about the evidence for His existence, just as suddenly I felt the certainty of His presence. And I was filled with that overwhelming joy you feel when God is just suddenly right there with you and you know that "all will be well."
And I "conversed" with God about Joel, and told Him that I was willing to let Him have Joel when He wanted Him.
And just as suddenly I was flooded with an overwhelming grief at the realization that God could take my son at any time. And I had just given Him "permission!" I crept out of my room and down my stairs as the realization that Joel would one day not be available for me to love here on earth anymore flooded over me. I wept, and wept for all that meant. It was a very painful experience. I cried silently and I sobbed out loud and my eyes grew swollen and my nose ran like a faucet. I mourned, because for a rare moment, I was able to grasp that Joel was dying.
Both of those moments were OK. Both of them were had a purpose. Feeling God's presence filled me with joy. Realizing that He could take Joel to be with Him at any time filled me with sadness. But all of it was truth. And though there was sadness, there was no despair. Yes, God exists. Yes, He will one day take over from me at looking after Joel. And no matter how much it pains me, it will happen.
I didn't like the crying, but I needed to mourn as much as I needed to be so totally assured that God existed. Because in the end, though it tears my heart out to lose Joel, I will be so relieved and at peace to know that the horrible separation I can't avoid will not be into some dark void of nothingness. Instead, it will be into God's gentle hands.
Let me back up a bit. A very good friend of mine had gotten me thinking. We were talking about God, about how a person could know His presence was real, and that it wasn't just an experience created by our own wishful thinking.
I often do think about these things, and she had gotten me thinking once again. You see, the funny thing is that so many people I know that have gone through some sort of awful experience have told me that God has felt so close to them, helping them through it all. Like God was close to them in a special way.
Of course, too, I have heard of people who felt the opposite, that God was distant as they were struggling.
In my own experience, for the most part, I have felt neither of these things particularly. Or to be more precise, at times God seems "closer" and at times He seems "farther away." Just like most of the other times of my life.
The "closer" times are great, and in the "farther away" times, faith can be put to the test. I have had to work through my faith many times in this way.
So, my friend had really gotten me thinking. Because through all that has happened, there have been times where what I believe has been tested. Mostly because, as I think of Joel dying, I am forced to really measure what I believe about life after death. If it was my own death, I think it might be easier.
But it is my boy that I am "allowing" to pass into that dark place we call death. It is one that I am bound to protect with my life. One that I would do anything to spare pain or suffering.
So I have many questions about death. Will he feel afraid? Will he feel himself "slipping away." What will this experience be like for him?
And, most importantly, can I really trust that this faith I have is not wishful thinking, and that my little boy will not merely be extinguished like a candle? That he will really and truly be passing on to a place that is full of light and love because God is there?
I have been reviewing some of the reasons I believe what I do.
And then last night I had one of those more rare occurrences where I REALLY felt God's presence. I mean, one of those strong experiences. I was thinking all day about why I was sure that God did exist and then I lay in bed and suddenly had one of those clear moments where I could just clearly see and believe it. I lay smiling in the dark because I KNEW that I wasn't just believing a fable. I felt this confidence that God was real as I thought through the logic of it, and as suddenly as the confidence had come over me while thinking about the evidence for His existence, just as suddenly I felt the certainty of His presence. And I was filled with that overwhelming joy you feel when God is just suddenly right there with you and you know that "all will be well."
And I "conversed" with God about Joel, and told Him that I was willing to let Him have Joel when He wanted Him.
And just as suddenly I was flooded with an overwhelming grief at the realization that God could take my son at any time. And I had just given Him "permission!" I crept out of my room and down my stairs as the realization that Joel would one day not be available for me to love here on earth anymore flooded over me. I wept, and wept for all that meant. It was a very painful experience. I cried silently and I sobbed out loud and my eyes grew swollen and my nose ran like a faucet. I mourned, because for a rare moment, I was able to grasp that Joel was dying.
Both of those moments were OK. Both of them were had a purpose. Feeling God's presence filled me with joy. Realizing that He could take Joel to be with Him at any time filled me with sadness. But all of it was truth. And though there was sadness, there was no despair. Yes, God exists. Yes, He will one day take over from me at looking after Joel. And no matter how much it pains me, it will happen.
I didn't like the crying, but I needed to mourn as much as I needed to be so totally assured that God existed. Because in the end, though it tears my heart out to lose Joel, I will be so relieved and at peace to know that the horrible separation I can't avoid will not be into some dark void of nothingness. Instead, it will be into God's gentle hands.
Tuesday, January 12, 2010
Positive-ism
Well, I'm not sure where to begin on this one, because I think the topic might be a bit "touchy." So let me start by first apologizing to my mother in law. She gets here in just three days and instead of getting ready for her, I'm writing a blog.
Sorry Ma! Yes, the laundry is backed up and yes, things might be a bit of a mess. Should be doing all that, but I needed to write. Sorry again.
Things have been going well lately. I have my support group with some good friends to "talk" to electronically, and life with Joel is in a "good" place right now. But back when things were nuts, a couple of things people said really bothered me.
And I don't know if I should really put this out here, cause there is definately something worse than saying the wrong thing and that is truly saying nothing at all. In fact, I don't hold it against any of them, because perhaps they meant well, and, well, if they didn't, I am also sure that I too have done the same to others so?? Life is too short to keep a list on people, and I don't even remember who they all were anymore.
So let me say this isn't really written "to" anyone. I'm not writing this to set anyone straight, it is just that it seems to me to be a sort of "belief system" out there that disturbs me at times. I got to get that off my chest. It is this attitude in itself that I am "talking" to, that I feel I need to have a discussion with. "Talk" to it, get it off my chest, and leave it at that.
I would call it "Positivism." Please don't think I am against being positive. That is totally a different word. Just adding that little suffix changes up the whole meaning. Big difference between community and communism, right? So, I am not against being positive.
But it seems to be there is this system of thought lurking out that holds it to be true that if we are just positive, if we just "look on the bright side" then everything will magically be ok for us. As if thinking the best will actually "cause" it to happen. As if you can just "will" yourself out of grief or depression or mourning, or whatever.
And sometimes I have even felt an implication that if I don't see the bright side of all the terrible and sad things that have happened, I'm doing things wrong. Some might go so far to feel, though perhaps not articulate even to themselves, that I am morally in the wrong when I share all my frustrations, sadness, or even anger. I'm being so negative!
And I'd like to say to them that I agree with them, when it comes to something like a flat tire. Sure, when you have a flat tire, maybe you should "lighten up" and see the positive. If you are just late for work, no biggie and maybe the "flat" kept you out of the 5 car pile up along your regular route. I can buy that.
Of course, if you were on your way to a job interview for the dream job you have always wanted, and you miss your one chance, it is a bit more difficult. And if we take it up a notch, and say that your mom was lying dying in the hospital and you were rushing to see her for the last time, then that flat tire seems to be to be a big tragedy you will not soon forget or let go of.
My point is that being positive really involves a "sliding scale." Some things are much more difficult that others. And some things really are off of that scale.
If you are chronically ill, if you have been betrayed by the love of your life, if someone you love has died, you have fallen into a hole of grief and pain and no amount of "exhortation" will help you out of it. For goodness sake, stop talking and go get a ladder!!! Jump in the hole yourself for awhile and see what it is like.
Some people just really don't understand the depths that life can cast you into. I think some of them sort of "measure up" what they think is an acceptable timetable to "get over" something.
"Ok, that is one week for the blindness, two weeks for having developmentally delayed child and a month for the shortened life span. So in about two months, you'll be ok and you won't need to keep going on about things." Maybe they don't say it so bluntly, but sometimes that is the feeling I get from people.
And what makes it hurtful is not when it is well meaning people who truly are sad you are grieving and what to "cheer you up." I know these people are trying to help in the only way they know how.
What makes it so hurtful is the people who give you that feeling that they are not so much trying to cheer you up as shut you up. Like they have taken enough and they don't have the time or the energy for your sadness. It is a burden they don't want to bear, so get over it already and quite being a baby!
No, no one has ever said anything that horrid to me. But at times when someone asked me how it was and I answered honestly, I have FELT it.
"Joel has been getting sick a lot lately and I am really worried."
"Oh well, sometimes even healthy children are sick. I'm sure it is something like that."
And a look away and change the subject to something "happier."
Like I said, I'm not trying to criticize anybody who actually takes the time to ask how I am. Believe me, you are automatically in my good books just for being brave enough to ask. I'm just sharing how some comments "feel" to me.
I don't need you to cheer me up. You can't. My baby is dying, and you can't cheer me up. How can you think that just by focusing on the good in my life I can ignore the fact that the little boy I love with my life is sick, is sometimes suffering, and is going to die, most likely before his 18th birthday? (and if I am honest, I doubt he'll even make it to 5.)
You can't cheer me up. You can only listen. You can ask "What is it about the infections that worry you so much?"
That gives me a chance to share my worries and sadness, to let go of some of it. If I want out of that deep pit, all the wishing in the world won't change it. I gotta dig my way up. Dig and dig, and it is messy, dirty, frustrating, two steps forward and one back sort of work. It's going to take TIME. Measured in YEARS, not months. You can help me by listening without judging.
Unless you have been through something like this, you will have to trust me on it. You can not get out of the pit of sadness, stress and depression that deep grief throws you in by trying to be "positive." You got to do your grief work, and no one can give you a time limit. You can't always change your life by willing it to be so.
So, thank you for the people who at least have the guts to stick around the edge of the pit! Thanks for caring that much, cause I know it isn't the most fun place to be. And a really big, special thank you to all the people who not only stick around, but get their hands dirty and jump right in there with me. You are a blessing!
Here's a thought: "So they sat down with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his grief was very great." (Job 2:13)
Sorry Ma! Yes, the laundry is backed up and yes, things might be a bit of a mess. Should be doing all that, but I needed to write. Sorry again.
Things have been going well lately. I have my support group with some good friends to "talk" to electronically, and life with Joel is in a "good" place right now. But back when things were nuts, a couple of things people said really bothered me.
And I don't know if I should really put this out here, cause there is definately something worse than saying the wrong thing and that is truly saying nothing at all. In fact, I don't hold it against any of them, because perhaps they meant well, and, well, if they didn't, I am also sure that I too have done the same to others so?? Life is too short to keep a list on people, and I don't even remember who they all were anymore.
So let me say this isn't really written "to" anyone. I'm not writing this to set anyone straight, it is just that it seems to me to be a sort of "belief system" out there that disturbs me at times. I got to get that off my chest. It is this attitude in itself that I am "talking" to, that I feel I need to have a discussion with. "Talk" to it, get it off my chest, and leave it at that.
I would call it "Positivism." Please don't think I am against being positive. That is totally a different word. Just adding that little suffix changes up the whole meaning. Big difference between community and communism, right? So, I am not against being positive.
But it seems to be there is this system of thought lurking out that holds it to be true that if we are just positive, if we just "look on the bright side" then everything will magically be ok for us. As if thinking the best will actually "cause" it to happen. As if you can just "will" yourself out of grief or depression or mourning, or whatever.
And sometimes I have even felt an implication that if I don't see the bright side of all the terrible and sad things that have happened, I'm doing things wrong. Some might go so far to feel, though perhaps not articulate even to themselves, that I am morally in the wrong when I share all my frustrations, sadness, or even anger. I'm being so negative!
And I'd like to say to them that I agree with them, when it comes to something like a flat tire. Sure, when you have a flat tire, maybe you should "lighten up" and see the positive. If you are just late for work, no biggie and maybe the "flat" kept you out of the 5 car pile up along your regular route. I can buy that.
Of course, if you were on your way to a job interview for the dream job you have always wanted, and you miss your one chance, it is a bit more difficult. And if we take it up a notch, and say that your mom was lying dying in the hospital and you were rushing to see her for the last time, then that flat tire seems to be to be a big tragedy you will not soon forget or let go of.
My point is that being positive really involves a "sliding scale." Some things are much more difficult that others. And some things really are off of that scale.
If you are chronically ill, if you have been betrayed by the love of your life, if someone you love has died, you have fallen into a hole of grief and pain and no amount of "exhortation" will help you out of it. For goodness sake, stop talking and go get a ladder!!! Jump in the hole yourself for awhile and see what it is like.
Some people just really don't understand the depths that life can cast you into. I think some of them sort of "measure up" what they think is an acceptable timetable to "get over" something.
"Ok, that is one week for the blindness, two weeks for having developmentally delayed child and a month for the shortened life span. So in about two months, you'll be ok and you won't need to keep going on about things." Maybe they don't say it so bluntly, but sometimes that is the feeling I get from people.
And what makes it hurtful is not when it is well meaning people who truly are sad you are grieving and what to "cheer you up." I know these people are trying to help in the only way they know how.
What makes it so hurtful is the people who give you that feeling that they are not so much trying to cheer you up as shut you up. Like they have taken enough and they don't have the time or the energy for your sadness. It is a burden they don't want to bear, so get over it already and quite being a baby!
No, no one has ever said anything that horrid to me. But at times when someone asked me how it was and I answered honestly, I have FELT it.
"Joel has been getting sick a lot lately and I am really worried."
"Oh well, sometimes even healthy children are sick. I'm sure it is something like that."
And a look away and change the subject to something "happier."
Like I said, I'm not trying to criticize anybody who actually takes the time to ask how I am. Believe me, you are automatically in my good books just for being brave enough to ask. I'm just sharing how some comments "feel" to me.
I don't need you to cheer me up. You can't. My baby is dying, and you can't cheer me up. How can you think that just by focusing on the good in my life I can ignore the fact that the little boy I love with my life is sick, is sometimes suffering, and is going to die, most likely before his 18th birthday? (and if I am honest, I doubt he'll even make it to 5.)
You can't cheer me up. You can only listen. You can ask "What is it about the infections that worry you so much?"
That gives me a chance to share my worries and sadness, to let go of some of it. If I want out of that deep pit, all the wishing in the world won't change it. I gotta dig my way up. Dig and dig, and it is messy, dirty, frustrating, two steps forward and one back sort of work. It's going to take TIME. Measured in YEARS, not months. You can help me by listening without judging.
Unless you have been through something like this, you will have to trust me on it. You can not get out of the pit of sadness, stress and depression that deep grief throws you in by trying to be "positive." You got to do your grief work, and no one can give you a time limit. You can't always change your life by willing it to be so.
So, thank you for the people who at least have the guts to stick around the edge of the pit! Thanks for caring that much, cause I know it isn't the most fun place to be. And a really big, special thank you to all the people who not only stick around, but get their hands dirty and jump right in there with me. You are a blessing!
Here's a thought: "So they sat down with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his grief was very great." (Job 2:13)
Friday, January 8, 2010
More on frogs
Well, that's that. The other frog died now too.
And I sent my son to nursery school with birthday cupcakes, but no snack, which was, of course, a no no. I should have realized that he would also need a snack, but I really don't know where my head is these days. I obviously can't really handle real life.
I've said this before, but really, it must be true: my brain has found a trapdoor at the back of my head. It has deserted the crazy depravity I call my life and has wandered away, likely to a nice, sunny place like Mexico, or maybe just California. Or perhaps a nice, safe little hole where it knows I will never find it...
It is funny. I have been feel so much better emotionally. Better than I have all year, but take that in context. You can't imagine how horrible this year has been, and if you can imagine, well...I send you my hugs cause you need them too. Despite my recent emotional "high" I am still crying ever night at Joel's bedside as I say the same basic prayer "Thank you God for another day with Joel. Please keep him through the night so he is still alive when I wake up. If that is not in Your plan, be gentle with him, and I still trust You." An emotional "high" is a relative term.
In any case, I have felt, in comparision to what was, almost giddy with relief and happiness in Joel's happiness and playfulness. The thing is, mentally, I am still a total basket case. I can not remember ANYTHING. And I have been getting sleep. This is the best I have slept in a year.
But last night Steve caught me. I had turned the overnight feeding pump with fluids to keep Joel hydrated on to 400mls an hour, instead of 40mls. That scared the poop out of me. Not that it would have killed Joel, or anything. Most likely if he couldn't have handled all the water that fast, he would have just puked it all up. Still, I have never made an error like that in all the sleep-deprived months previous. I have gotten a little nervous about giving Joel his meds. I check the bottles every time, but still. It seems like the sudden relief of all the stress and insanity have made me dizzy.
I think I am suffering from decompression sickness. I came up too fast and I can't handle it. Maybe it is post-traumatic stress disorder?? I don't know.
Because I really did not think that my little boy would live to see his 2nd birthday. And he still might not. But I can tell you that if you think your child has only months to live and then suddenly they start to do better, you will feel over the moon. Even if your husband's salary is cut in half, or you are flunking out of the mom section of nursery school. It changes the perspective on everything. And that goes for you doing so well too, Dad. I know you read this every time I write it. The fact that my Dad has, at least for now, beaten leukemia and my little boy is, at least for now, doing well makes me so grateful. So grateful.
So I hope you will forgive me my many lapses. I might be spaced out. I might be emotionally fragile. I might be difficult to talk to, and really annoying if you are the nursery school teacher. But I AM THANKFUL. And that is saying a lot.
And I sent my son to nursery school with birthday cupcakes, but no snack, which was, of course, a no no. I should have realized that he would also need a snack, but I really don't know where my head is these days. I obviously can't really handle real life.
I've said this before, but really, it must be true: my brain has found a trapdoor at the back of my head. It has deserted the crazy depravity I call my life and has wandered away, likely to a nice, sunny place like Mexico, or maybe just California. Or perhaps a nice, safe little hole where it knows I will never find it...
It is funny. I have been feel so much better emotionally. Better than I have all year, but take that in context. You can't imagine how horrible this year has been, and if you can imagine, well...I send you my hugs cause you need them too. Despite my recent emotional "high" I am still crying ever night at Joel's bedside as I say the same basic prayer "Thank you God for another day with Joel. Please keep him through the night so he is still alive when I wake up. If that is not in Your plan, be gentle with him, and I still trust You." An emotional "high" is a relative term.
In any case, I have felt, in comparision to what was, almost giddy with relief and happiness in Joel's happiness and playfulness. The thing is, mentally, I am still a total basket case. I can not remember ANYTHING. And I have been getting sleep. This is the best I have slept in a year.
But last night Steve caught me. I had turned the overnight feeding pump with fluids to keep Joel hydrated on to 400mls an hour, instead of 40mls. That scared the poop out of me. Not that it would have killed Joel, or anything. Most likely if he couldn't have handled all the water that fast, he would have just puked it all up. Still, I have never made an error like that in all the sleep-deprived months previous. I have gotten a little nervous about giving Joel his meds. I check the bottles every time, but still. It seems like the sudden relief of all the stress and insanity have made me dizzy.
I think I am suffering from decompression sickness. I came up too fast and I can't handle it. Maybe it is post-traumatic stress disorder?? I don't know.
Because I really did not think that my little boy would live to see his 2nd birthday. And he still might not. But I can tell you that if you think your child has only months to live and then suddenly they start to do better, you will feel over the moon. Even if your husband's salary is cut in half, or you are flunking out of the mom section of nursery school. It changes the perspective on everything. And that goes for you doing so well too, Dad. I know you read this every time I write it. The fact that my Dad has, at least for now, beaten leukemia and my little boy is, at least for now, doing well makes me so grateful. So grateful.
So I hope you will forgive me my many lapses. I might be spaced out. I might be emotionally fragile. I might be difficult to talk to, and really annoying if you are the nursery school teacher. But I AM THANKFUL. And that is saying a lot.
Grudges
I wrote this blog quite a while ago, but just didn't seem to find the "right time" to post it. I think I will post it now. It's about time.
In my usual vein of honesty, I have got a confession to make. For the past year or so, I have held some "grudges."
Before I go on with this, let me say that if, as you read this, you get the uncomfortable feeling I am talking about you, you must promise to read through to the end. I don't think any of the people I am refering to would be the people who would read my blog, but on the off chance it is you, or you feel it is, please keep reading.
This last year I have been really let down by some of my friends. There is nothing like going through a big time mess of grief, sadness, stress, disappointment, depression, whatever it is, there is nothing like it to show who the real "stick to it and I can count on you anytime" friends are, and who the, um, well, let's just say they won't be getting a Christmas card this year type of friends are.
Yeah. The friends who don't call you. The ones who avoid you or who are "too busy" to come by. Ever.
And that really, really hurts. So I have found myself carry around this list, the friends who get my "razzie" award. And it has been really hard to shake that list off. It seems to have gotten stuck to my fingertips with crazy glue.
The funny thing about forgiveness. You will find, not as a rule, but generally true, that if you are the sort of person who easily forgives other people, you will find it easier to forgive yourself. And if you are the sort of person for whom forgiving others is difficult, I would lay money on the likelihood that you have a hard time letting go of your own mistakes. In fact, you might be even harder on yourself than you are on other people.
Jesus says, right after the Lord's Prayer, "If you forgive others the wrong they do to you, your heavenly Father will also forgive you." I do think that Jesus meant this literally. It is certainly said more than once and many different ways. It seems clear that God wants us to forgive and to be merciful. And He seems to think that it is a hypocrisy of the worst nature to expect to be forgiven for what we do and yet demand that others "pay for what they have done."
At least, that has been my experience. And this year I have not only learned which friends of mine were true, I have had my eyes opened to see more of the times where I myself let someone down. I was not there for them. I was too tired to listen. I didn't have time to call. I didn't feel like sharing their "unhappy space" with them.
So I think I will have to forgive these people. It does me no good to try and convince myself I am somehow better. Truth is, I might be on someone else's "razzie" list. I have been far from perfect, and will also be far from perfect in the future.
And so, I say it now, and will practice saying it again and again, until I get better at letting it go "I forgive you." You don't have to apologize, grovel or perform mighty acts of penance. God has freely forgiven me, and I'm going to freely forgive you too. I hope you will do the same for me.
In my usual vein of honesty, I have got a confession to make. For the past year or so, I have held some "grudges."
Before I go on with this, let me say that if, as you read this, you get the uncomfortable feeling I am talking about you, you must promise to read through to the end. I don't think any of the people I am refering to would be the people who would read my blog, but on the off chance it is you, or you feel it is, please keep reading.
This last year I have been really let down by some of my friends. There is nothing like going through a big time mess of grief, sadness, stress, disappointment, depression, whatever it is, there is nothing like it to show who the real "stick to it and I can count on you anytime" friends are, and who the, um, well, let's just say they won't be getting a Christmas card this year type of friends are.
Yeah. The friends who don't call you. The ones who avoid you or who are "too busy" to come by. Ever.
And that really, really hurts. So I have found myself carry around this list, the friends who get my "razzie" award. And it has been really hard to shake that list off. It seems to have gotten stuck to my fingertips with crazy glue.
The funny thing about forgiveness. You will find, not as a rule, but generally true, that if you are the sort of person who easily forgives other people, you will find it easier to forgive yourself. And if you are the sort of person for whom forgiving others is difficult, I would lay money on the likelihood that you have a hard time letting go of your own mistakes. In fact, you might be even harder on yourself than you are on other people.
Jesus says, right after the Lord's Prayer, "If you forgive others the wrong they do to you, your heavenly Father will also forgive you." I do think that Jesus meant this literally. It is certainly said more than once and many different ways. It seems clear that God wants us to forgive and to be merciful. And He seems to think that it is a hypocrisy of the worst nature to expect to be forgiven for what we do and yet demand that others "pay for what they have done."
Because that is what forgiveness is. My favorite fictional work says that forgiveness is a flower named "Bearing the Cost." That is exactly what forgiveness truly is. We ourselves bear the cost, or pay for what another has done. So if I forgive you a debt, I absorb the cost. And if I forgive you for hurting me, I absorb that hurt without trying to get you to pay for it with your own pain or penance.
I think when the Bible speaks of forgive and be forgiven there is another aspect here. It seems to me that when we forgive, we enable ourselves to experience forgiveness ourselves. Maybe others have forgiven us for what we have done, but we just can't feel it. Our mistakes and misdeed, all the ill we have done by accident or on purpose, follows after us and pops into our minds at the worst times, like late at night when we want to sleep. We feel, no matter what we know about being forgiven, that we must do penance, we must suffer, we must feel guilty and miserable for what we have done.
It seems to me that by forgiving those who have hurt us, we free ourselves not only from the grudges and "razzie lists" we hold, but from our own feelings of guilt, shame, and pain at what we have done. We allow ourselves to look in the mirror once again.
At least, that has been my experience. And this year I have not only learned which friends of mine were true, I have had my eyes opened to see more of the times where I myself let someone down. I was not there for them. I was too tired to listen. I didn't have time to call. I didn't feel like sharing their "unhappy space" with them.
So I think I will have to forgive these people. It does me no good to try and convince myself I am somehow better. Truth is, I might be on someone else's "razzie" list. I have been far from perfect, and will also be far from perfect in the future.
And so, I say it now, and will practice saying it again and again, until I get better at letting it go "I forgive you." You don't have to apologize, grovel or perform mighty acts of penance. God has freely forgiven me, and I'm going to freely forgive you too. I hope you will do the same for me.
Wednesday, January 6, 2010
Perfect, or Dead Frogs
Every now and then, I have a few days where I feel just yucky.
I have always known that I would never get "Mother of the Year" as an award. I have many failings as a person, and moms are people too, so there is definately a carry over effect.
But most of the time, I sort of think I do "ok." If you don't count the effects of Joel's illness, my boys are for the most part healthy and happy. I figure that Caeden behaves reasonably well for his age, and seems to have reached an appropriate level developmentally. I even think I do some things pretty good. Like I never lie to Caeden, and I am pretty good at understanding him and explaining stuff so he "gets" it.
Even now and then, though, I have a few days...
Because I will never be one of those "perfect" moms. You are out there, and I have a suspicion you know who you are!!! I mean the moms who are always dressed in "nice" pants, or at least new, stylish jeans, and a blouse or a pretty sweater. The ones who not only have smart hair cuts and pretty highlights, but also fixed their make up before they went out for groceries. I'm there in my stretchy pants, the only ones that fit now that I gained all the weight, and make up is reserved for "special" occasions.
Those moms that work out and stay in shape. They sweep their floor every single day. I've tried that once or twice, but the fact that crumbs would appear under my table about 20 minutes later just defeated me.
Their children are well dressed too. I am pretty sure that they have never gotten their child up in the morning and seen last night's chocolate cake still in the corners of a little mouth. Or let their little boy wear his pajamas ALL DAY LONG.
I think that they engage their children in "learning experiences" and don't just turn on Treehouse.
Ah me. These "perfect" moms bring their children to nursery school and remember everything. Like fundraisers. The ones I take home the papers for, put them down somewhere and never think of again until I see the sign on the door "fundraiser sheets due today." Never mind the fundraiser sheets, how about forgetting that fees are due??
At the Christmas party they brought little gift bags for every child! (which means they actually knew every child's name!!!) Never mind the gift and card for teacher. My card was at home. I was meaning to write a beautiful apology in it for the fact that my little boy has wet his pants about 5 times now and a big thank you for all of Mrs. Kim's patience in dealing with everything, but you know, I forgot! Until I got there, that is...
Then, 2 days ago, one of the frogs was dead... On top of all my other failings, it was too much. You would have thought that little frog was my pet of 20 years instead of 2 months. Thing is, I think I killed it. NO, NOT on PURPOSE! I am unmotivated, disorganized, a bit lax on cleanliness, but I am not cruel. (just don't talk to my husband, I think he might think I am cruel).
It was just one more thing I had been "meaning" to do for awhile, clean the frog tank. I think that I left it long enough to affect the ph balance and that might have been what did it. (in my defense, the tank is small, and needs a weekly cleaning)
I confess we got the frogs as a sort of "preparation" lesson for Caeden, thinking it very likely they would die before Joel. I suppose that must sound terrible, but really, it is kind... I wanted Caeden to lose something small as preparation and so I could discuss death a bit with him before something really huge and sad and overwhelming happened.
But I didn't want to KILL the frog. I didn't want it to be MY fault. And I didn't want it to die NOW. How could I let something like that happen to Caeden's little pet?? And I felt like just the most rotten terrible mother ever.
I feel like a walking disaster sometimes. You know the laws of physics? The one that says that everything returns to a level of disorganization unless force and energy are applied to it? (ok, that is a big paraphrase, but!! My major is English lit, not science) Well, sometimes I think that law has been really at work especially in my BRAIN. I think a huge level of disorganization has occurred there...
I don't think I was ever a person who "had it all together." But even less so now. And sometimes I really get down about it. I feel like a failure. I feel like a bad mother. I feel like it must be pretty pitiful when you can't remember a thank you card, you can't get your floor swept once a day (or once a week!), and you can't even keep a frog alive! And that is only the start of the list.
And even worse, I feel like everyone else knows it too. I wonder if all the other "perfect" mothers give an internal sigh and shake of their heads at my sad state...
When I worked at camp, way, way back, I had to learn a really hard lesson. I was put in charge of directing a camp (pretty crazy, can you believe that someone entrusted me with 48 little 6 to 8 year olds and 6 or 7 counselors???). Just about every day one of the things happened. Either someone came by and praised what I was doing up and down. Or someone came by and complained about what I was doing and said I wasn't doing things right.
Finally, I had to go and have a chat with God. Because people are great, but they are constantly evaluating us and sometimes they praise us if we measure up and sometimes they tear us down if we screw up. So I had to find my equilibrium with God. Cause no matter if I'm failing or succeeding, He loves me. He just wants me to keep trying and He doesn't measure success by our nice hairstyle, clothes, or even ability to remember basic human courtesies like thank you cards. He just measures the sincerity of our hearts, and our only job is to keep those hearts in the right place with Him. Something I struggle to remember each day...
I have always known that I would never get "Mother of the Year" as an award. I have many failings as a person, and moms are people too, so there is definately a carry over effect.
But most of the time, I sort of think I do "ok." If you don't count the effects of Joel's illness, my boys are for the most part healthy and happy. I figure that Caeden behaves reasonably well for his age, and seems to have reached an appropriate level developmentally. I even think I do some things pretty good. Like I never lie to Caeden, and I am pretty good at understanding him and explaining stuff so he "gets" it.
Even now and then, though, I have a few days...
Because I will never be one of those "perfect" moms. You are out there, and I have a suspicion you know who you are!!! I mean the moms who are always dressed in "nice" pants, or at least new, stylish jeans, and a blouse or a pretty sweater. The ones who not only have smart hair cuts and pretty highlights, but also fixed their make up before they went out for groceries. I'm there in my stretchy pants, the only ones that fit now that I gained all the weight, and make up is reserved for "special" occasions.
Those moms that work out and stay in shape. They sweep their floor every single day. I've tried that once or twice, but the fact that crumbs would appear under my table about 20 minutes later just defeated me.
Their children are well dressed too. I am pretty sure that they have never gotten their child up in the morning and seen last night's chocolate cake still in the corners of a little mouth. Or let their little boy wear his pajamas ALL DAY LONG.
I think that they engage their children in "learning experiences" and don't just turn on Treehouse.
Ah me. These "perfect" moms bring their children to nursery school and remember everything. Like fundraisers. The ones I take home the papers for, put them down somewhere and never think of again until I see the sign on the door "fundraiser sheets due today." Never mind the fundraiser sheets, how about forgetting that fees are due??
At the Christmas party they brought little gift bags for every child! (which means they actually knew every child's name!!!) Never mind the gift and card for teacher. My card was at home. I was meaning to write a beautiful apology in it for the fact that my little boy has wet his pants about 5 times now and a big thank you for all of Mrs. Kim's patience in dealing with everything, but you know, I forgot! Until I got there, that is...
Then, 2 days ago, one of the frogs was dead... On top of all my other failings, it was too much. You would have thought that little frog was my pet of 20 years instead of 2 months. Thing is, I think I killed it. NO, NOT on PURPOSE! I am unmotivated, disorganized, a bit lax on cleanliness, but I am not cruel. (just don't talk to my husband, I think he might think I am cruel).
It was just one more thing I had been "meaning" to do for awhile, clean the frog tank. I think that I left it long enough to affect the ph balance and that might have been what did it. (in my defense, the tank is small, and needs a weekly cleaning)
I confess we got the frogs as a sort of "preparation" lesson for Caeden, thinking it very likely they would die before Joel. I suppose that must sound terrible, but really, it is kind... I wanted Caeden to lose something small as preparation and so I could discuss death a bit with him before something really huge and sad and overwhelming happened.
But I didn't want to KILL the frog. I didn't want it to be MY fault. And I didn't want it to die NOW. How could I let something like that happen to Caeden's little pet?? And I felt like just the most rotten terrible mother ever.
I feel like a walking disaster sometimes. You know the laws of physics? The one that says that everything returns to a level of disorganization unless force and energy are applied to it? (ok, that is a big paraphrase, but!! My major is English lit, not science) Well, sometimes I think that law has been really at work especially in my BRAIN. I think a huge level of disorganization has occurred there...
I don't think I was ever a person who "had it all together." But even less so now. And sometimes I really get down about it. I feel like a failure. I feel like a bad mother. I feel like it must be pretty pitiful when you can't remember a thank you card, you can't get your floor swept once a day (or once a week!), and you can't even keep a frog alive! And that is only the start of the list.
And even worse, I feel like everyone else knows it too. I wonder if all the other "perfect" mothers give an internal sigh and shake of their heads at my sad state...
When I worked at camp, way, way back, I had to learn a really hard lesson. I was put in charge of directing a camp (pretty crazy, can you believe that someone entrusted me with 48 little 6 to 8 year olds and 6 or 7 counselors???). Just about every day one of the things happened. Either someone came by and praised what I was doing up and down. Or someone came by and complained about what I was doing and said I wasn't doing things right.
Finally, I had to go and have a chat with God. Because people are great, but they are constantly evaluating us and sometimes they praise us if we measure up and sometimes they tear us down if we screw up. So I had to find my equilibrium with God. Cause no matter if I'm failing or succeeding, He loves me. He just wants me to keep trying and He doesn't measure success by our nice hairstyle, clothes, or even ability to remember basic human courtesies like thank you cards. He just measures the sincerity of our hearts, and our only job is to keep those hearts in the right place with Him. Something I struggle to remember each day...
Monday, January 4, 2010
Mourners
Today a friend from the online support group reminded me of the day Steve and I sat down and got "the news." She mentioned the expression on the doctor's faces...
I don't remember the exact faces on the doctors, but I did take a trip down memory lane to that stomach churning, horrid day.
What I do remember is how it made me angry that I was in a room surrounded by virtual strangers to get the worst news of my life. I was angry that I was there, in that room, getting such a blow with these grave, calm professional people all around me in my most vulnerable moments of my life. My whole emotional being was laid bare there in that room, and they were all witnesses...
But I realize now that what actually made me angry was not that I was so vulnerable in front of strangers. What made me so angry was that Steve and I were the only ones crying. We were the ones with tears blurring our vision while all around us the kind, but controlled medical staff sat. They were, of course, concerned, but they were not GRIEVING, and this is what I resented.
I wanted them all to lose control too. I wanted them to have tears in their eyes, to grab a kleenex to blow their noses. To sniffle a bit. A floor down from that room a little boy was so sick that he was gradually dying and I wanted some GRIEF!
This has all made me think about things. For one thing, it made me think about something recorded in the Bible. When Jesus' friend Lazurus had died. His sisters', Mary and Martha are grieving for him, and they are surrounded by "mourners" who are doing a traditional "good duty" in their role as comforters to the sisters. They are loudly crying, even wailing, openly mourning the death of this man.
I had always found this custom strange, and somewhat hypocritical. Why would you want so many people around you crying? It is very out of touch with our own society, where our grief is to be controlled, where we are not effusive or demonstitive in our emotions of loss. Solemn constraint, quiet tears, are more acceptable.
Suddenly, I saw the possible beauty, the freedom, in this custom. EVERYONE was weeping. EVERYONE was loudly sobbing, sniffling, wailing. So that the really devasted ones could be free to grieve. No one would stare at them if they cried too loudly. No one to notice if they were "taking it well." Too much noise, too many people crying for anyone to stand out, or feel vulnerable and exposed.
I have a wonderful social worker who has given me a lot of support and help. The best thing about her though, is that when she enters a room and finds me weeping, she cries too. I do not mourn alone. This has always meant the world to me.
And so, when one day my little boy passes away and I face that terrible void, I hope I shall find a group of "mourners" to surround me. People unafraid and uninhibited to wail and cry with me. No one will have to offer me a seditive or avert their eyes in embarrassment at my display. We will all be vulnerable together. And I hope that I will be that way for anyone else who needs it too...
Rejoice with those who rejoice, and weep with those who weep... (Romans 12:15)
I don't remember the exact faces on the doctors, but I did take a trip down memory lane to that stomach churning, horrid day.
What I do remember is how it made me angry that I was in a room surrounded by virtual strangers to get the worst news of my life. I was angry that I was there, in that room, getting such a blow with these grave, calm professional people all around me in my most vulnerable moments of my life. My whole emotional being was laid bare there in that room, and they were all witnesses...
But I realize now that what actually made me angry was not that I was so vulnerable in front of strangers. What made me so angry was that Steve and I were the only ones crying. We were the ones with tears blurring our vision while all around us the kind, but controlled medical staff sat. They were, of course, concerned, but they were not GRIEVING, and this is what I resented.
I wanted them all to lose control too. I wanted them to have tears in their eyes, to grab a kleenex to blow their noses. To sniffle a bit. A floor down from that room a little boy was so sick that he was gradually dying and I wanted some GRIEF!
This has all made me think about things. For one thing, it made me think about something recorded in the Bible. When Jesus' friend Lazurus had died. His sisters', Mary and Martha are grieving for him, and they are surrounded by "mourners" who are doing a traditional "good duty" in their role as comforters to the sisters. They are loudly crying, even wailing, openly mourning the death of this man.
I had always found this custom strange, and somewhat hypocritical. Why would you want so many people around you crying? It is very out of touch with our own society, where our grief is to be controlled, where we are not effusive or demonstitive in our emotions of loss. Solemn constraint, quiet tears, are more acceptable.
Suddenly, I saw the possible beauty, the freedom, in this custom. EVERYONE was weeping. EVERYONE was loudly sobbing, sniffling, wailing. So that the really devasted ones could be free to grieve. No one would stare at them if they cried too loudly. No one to notice if they were "taking it well." Too much noise, too many people crying for anyone to stand out, or feel vulnerable and exposed.
I have a wonderful social worker who has given me a lot of support and help. The best thing about her though, is that when she enters a room and finds me weeping, she cries too. I do not mourn alone. This has always meant the world to me.
And so, when one day my little boy passes away and I face that terrible void, I hope I shall find a group of "mourners" to surround me. People unafraid and uninhibited to wail and cry with me. No one will have to offer me a seditive or avert their eyes in embarrassment at my display. We will all be vulnerable together. And I hope that I will be that way for anyone else who needs it too...
Rejoice with those who rejoice, and weep with those who weep... (Romans 12:15)
Sunday, January 3, 2010
Caeden
Yesterday was Caeden's birthday. As he is the eldest, healthy child, I have often worried that he is being neglected, or scarred, by what goes on in our house. But it doesn't seem this is so. (and in truth, I think I neglect both my children equally.)
I am constantly suprised by how happy and well adjusted he seems to be. Of course, he is too young to grasp most of what is happening to Joel. He has only just barely grasped it that Joel eats through his tummy tube, and the whole thing about Joel being blind is still a dim flickering in the back of his mind. Never mind all the other ramifications of the whole thing.
But despite the sadness, and perhaps even some depression, that has been part of our home for the last year, despite all the appointments and some hospital stays and all, he seems to be a bright, cheerful child who is developing and growing in a perfectly normal and healthy way.
So, I wanted to write something about him, the boy we all ask about second, or sometimes not at all.
Because he is something of a saving grace that God has given to us. When I first joined the online support group, I expressed some suprise that I could only "find" one other person in Manitoba whose child had this disorder. That doesn't add up to the population, even if you count the short life span involved.
One of the parents told me that she thought some people just never connected to anyone. She said when their child was the first one and thus only child, they often just "hid" themselves away, as it was just to painful to be involved...
I was suprised by this, as it is something that seemed so foreign to my own nature, I had a hard time conceiving of it. But as time when on, I came to understand it very well. As we actually lived with Joel's diagnosis, I discovered the terrible pain involved in being involved.
Let me share my experience so you will understand how deeply life can cut. I still remember this, and it happened over a year ago. The first time I took Joel to the infant room at church. It was a very painful experience to explain about Joel's ng tube that he had at the time, and that he could possibly have seizure activity, and that he had very low tone, etc. I don't even know how to explain this pain to you. Like having to explain to people that your husband has left you, or you ran over someone and killed them. Like trying to crack a nut on a decaying tooth, just grinding down on it till your eyes water...
It is so good that our society is making headway in including people with disabilities and in seeing beyond the disabilities to the abilities. It really is a great thing. The hard thing is that I think it makes it difficult for people to really understand that there is still pain involved for a mother, when her child is suffering so many losses. I think they sort of feel that it should sort of be "business as usual" for me when I deal with it all. Of course, I will be seeing the "abilities" too. They don't realize that as a mom, those damn disabilities just won't lie quiet.
That first day of explaining as I filled out forms and handed them the little information paper I had carefully typed up, I was on the verge of a breakdown into tears the whole time. I can imagine why any parent would start to avoid these experiences. Staying at home is much less painful.
And then, I still remember this clear as day: when we got into the infant room there was the most gorgeous, healthy little girl about Joel's age. She was in a white and red dress. She was so strong, she was almost able to stand while grasping her mother's shoulders, and sitting was no problem. Her chubby little thighs were so nice and fat and strong. Even a year later, I can still picture her. And there I sat, with my thin little boy fussing and wailing in my lap. Even I could not comfort him... So I sat in that baby room ready to burst into tears, trying so desperately to regain my control...
So, I can understand why people might bury themselves at home. Much, much easier. In fact, I can see that I myself might have done that. If it wasn't for one thing: Caeden.
He was my cure. My normal, healthy little boy who needed and deserved to be involved in the "normal" healthy world of children that run and scream with laughter. Who needs to go to Sunday School, and Nursery school, and swimming pools and all.
And really, he makes all healthy children easier for me to bear and be around. Because he himself is healthy. It is sometimes painful for me at Christmas or other special events, because he highlights for me all that Joel misses. But because he does this, it makes it pointless to try to hide away. Everything that is different about Joel, every experience he will never have, Caeden points this all out with great clarity. I have to face it, because I am not prepared to live without Caeden in order to avoid it!!
This is painful, yes. But I am so, so, so grateful for this. Caeden forces me in to the healthy, happy world of children. Away from doctors and illness, worries and disabilities.
Into knees that are scraped from falls running, and disappointments when new Christmas toys break. Into struggles to make clear grown up expressions "it was your puweasure Grandma" (pleasure). Into wanting to "do it myself" and fears of monsters under the bed. And birthday parties where the big excitment is the cars on the cake...
It still pains me sometimes, when I see a little babe half of Joel's age and able to do 4 times as much. Of course, it pains me. But I can deal with that. Because it is such a beautiful and wonderful thing too. My own sweet little oldest child has taught me that. He has forced me to be brave, to be tough, to face all the goodness in the world of children without flinching.
So I must say, thank you to God, for giving me Caeden first, and to Caeden too. For just being himself.
I am constantly suprised by how happy and well adjusted he seems to be. Of course, he is too young to grasp most of what is happening to Joel. He has only just barely grasped it that Joel eats through his tummy tube, and the whole thing about Joel being blind is still a dim flickering in the back of his mind. Never mind all the other ramifications of the whole thing.
But despite the sadness, and perhaps even some depression, that has been part of our home for the last year, despite all the appointments and some hospital stays and all, he seems to be a bright, cheerful child who is developing and growing in a perfectly normal and healthy way.
So, I wanted to write something about him, the boy we all ask about second, or sometimes not at all.
Because he is something of a saving grace that God has given to us. When I first joined the online support group, I expressed some suprise that I could only "find" one other person in Manitoba whose child had this disorder. That doesn't add up to the population, even if you count the short life span involved.
One of the parents told me that she thought some people just never connected to anyone. She said when their child was the first one and thus only child, they often just "hid" themselves away, as it was just to painful to be involved...
I was suprised by this, as it is something that seemed so foreign to my own nature, I had a hard time conceiving of it. But as time when on, I came to understand it very well. As we actually lived with Joel's diagnosis, I discovered the terrible pain involved in being involved.
Let me share my experience so you will understand how deeply life can cut. I still remember this, and it happened over a year ago. The first time I took Joel to the infant room at church. It was a very painful experience to explain about Joel's ng tube that he had at the time, and that he could possibly have seizure activity, and that he had very low tone, etc. I don't even know how to explain this pain to you. Like having to explain to people that your husband has left you, or you ran over someone and killed them. Like trying to crack a nut on a decaying tooth, just grinding down on it till your eyes water...
It is so good that our society is making headway in including people with disabilities and in seeing beyond the disabilities to the abilities. It really is a great thing. The hard thing is that I think it makes it difficult for people to really understand that there is still pain involved for a mother, when her child is suffering so many losses. I think they sort of feel that it should sort of be "business as usual" for me when I deal with it all. Of course, I will be seeing the "abilities" too. They don't realize that as a mom, those damn disabilities just won't lie quiet.
That first day of explaining as I filled out forms and handed them the little information paper I had carefully typed up, I was on the verge of a breakdown into tears the whole time. I can imagine why any parent would start to avoid these experiences. Staying at home is much less painful.
And then, I still remember this clear as day: when we got into the infant room there was the most gorgeous, healthy little girl about Joel's age. She was in a white and red dress. She was so strong, she was almost able to stand while grasping her mother's shoulders, and sitting was no problem. Her chubby little thighs were so nice and fat and strong. Even a year later, I can still picture her. And there I sat, with my thin little boy fussing and wailing in my lap. Even I could not comfort him... So I sat in that baby room ready to burst into tears, trying so desperately to regain my control...
So, I can understand why people might bury themselves at home. Much, much easier. In fact, I can see that I myself might have done that. If it wasn't for one thing: Caeden.
He was my cure. My normal, healthy little boy who needed and deserved to be involved in the "normal" healthy world of children that run and scream with laughter. Who needs to go to Sunday School, and Nursery school, and swimming pools and all.
And really, he makes all healthy children easier for me to bear and be around. Because he himself is healthy. It is sometimes painful for me at Christmas or other special events, because he highlights for me all that Joel misses. But because he does this, it makes it pointless to try to hide away. Everything that is different about Joel, every experience he will never have, Caeden points this all out with great clarity. I have to face it, because I am not prepared to live without Caeden in order to avoid it!!
This is painful, yes. But I am so, so, so grateful for this. Caeden forces me in to the healthy, happy world of children. Away from doctors and illness, worries and disabilities.
Into knees that are scraped from falls running, and disappointments when new Christmas toys break. Into struggles to make clear grown up expressions "it was your puweasure Grandma" (pleasure). Into wanting to "do it myself" and fears of monsters under the bed. And birthday parties where the big excitment is the cars on the cake...
It still pains me sometimes, when I see a little babe half of Joel's age and able to do 4 times as much. Of course, it pains me. But I can deal with that. Because it is such a beautiful and wonderful thing too. My own sweet little oldest child has taught me that. He has forced me to be brave, to be tough, to face all the goodness in the world of children without flinching.
So I must say, thank you to God, for giving me Caeden first, and to Caeden too. For just being himself.
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