Guest Speaker

Today my husband made a request that really surprised me. I mean, I was really taken aback. I didn't know what to say, a rare occurrence, I'm sure you'll agree.

You see, he asked if he could "borrow" my blog and make an entry here. He didn't want a blog of his own, he just wanted a chance to write one entry of his own thoughts and experience.

Normally, I'm not the sort of wife to share a blog. If Steve asks for a bite of my cheesecake, I tell him, "There's lots more in the fridge. Why don't you just go get your own piece?" Really. I have said this sort of thing, about desserts for sure, though this is the first time a blog has come up. I really am that sort of wife, and I would probably have told him just to go get his own blog, as they are free.

Well, I've thought about it, and this is to warn you: I think I might have to let him. As stated above, it's not really the sort of thing I would normally "share," but in this case, I'm going to have to.

For one thing, I am terribly curious as to what he will say. :) Yes, honey, I am! ;)

But beyond that, is the simple truth that I think he really should share more. I want him to share more and I encourage him to share more, not just with me, but with other people too.

He's a bit of a paradox, that husband of mine. Sometimes you just can't get him to stop talking either (yup, just like me!). But other times, it is really hard to know what is going on up there in that steel trap called his mind. Especially when it comes to things that are emotionally charged with grief or sadness.

So, if my blog has inspired him to share something, and if letting him use my blog will help me get a chance to hear his (gulp) feelings and thoughts in a deeper or more elaborated way, I guess I'll have to take it. If he still has the will and the words.

Not to mention that the rest of the family who reads this would be thrilled. (I know you would, Ma, I know you would. You are sitting there reading this just overjoyed at the thought and you can't stay still in your seat. Yes, you better call Pa over too, and make sure he reads it as well!)

I hope none of you will mind this guest speaker. I don't know exactly when he is planning to write it, but keep it in the back of your minds for me, eh? Cut him a little slack, he's a man, and he's not used to sharing things fraught with deep emotional pain. (Ok, small joke, not that funny. It really isn't easy for some of us women, either, right?) I hope you will make him feel at home and write in friendly and encouraging comments and all that. I really appreciate your support on this one. Thanks bunches, everyone.

He's a good guy, and a really loving daddy. Caeden, Joel, and I all really love him back.

Rainbows & Earthquakes

This is going to be a bit of an explanation. An explanation about the blog. "Oh no!", you must be thinking, "Now she's writing blogs about her blog!"

Most of the time when I write in here, I find that the blog has already pretty much "written itself" in my head and heart before I sit down here. I'm just letting it all out, and all my wonderful "followers" (ha ha, what a funny term!) are vaguely in the back of my mind, but what I am writing is up there at the front trying to scratch it's way out of the box of my mind.

This time, I guess, I am writing a bit more with those who read this in the front of my mind. Though I think the blog still had pretty much written itself before I sat down. I had pressing things to say, but there were really things I wanted to say to you all, by way of an explanation, I suppose.

I have always felt love and support, when I heard anyone comment that they read this blog, and it has filled me with pleasure, when they said they enjoyed it or understood it, it has made me feel loved and understood and cared for, and I am grateful for that. It has also made me feel humble, in a way, and surprised, to know that people would read all my emotional-type blatherings and still enjoy them, or very surprising to me, want to continue to read them. So please don't think that anyone has ever questioned or criticised me (expect my husband and that is his job!)

There is something that niggles at the back of my mind, though, and I want to give you all a bit of an explanation, for I feel I owe it to you, since you have continued to read this, in spite of my obvious failings, or maybe because of them.

I'd call it my "Catholic conscience", but I'm not Catholic. I just wonder at times, if those readers/friends who believe in God, and hold Him in a prominent place in their life, are often wondering at the sort of "earthy" nature of some of what I write. I wonder if they are surprised I don't mention Him more, or perhaps think I should praise Him more often, or?? (fill in the blanks)

And now I can imagine that my friends/readers who don't have a stance on God one way or another, or who have difficulty even imagining He exists, are totally surprised at the notion. I wonder if they think I never seem to shut up about God, if I can say more than five words without mentioning Him.

I'm smiling as I write this. The thoughts don't really offend me, and perhaps none of them ever cross any of your minds in any way. I don't know. It is largely a one way conversation we have going here, and since I hog the podium, the downside is, most of the time your thoughts are opaque to me.

In any case, I found myself wanting to explain myself a bit, and also maybe answer the question my sister in law asked me, about why I had called my blog what I did.

So let me say that the purpose of this blog is not a sermon. I'm not exactly writing a hymn here, though I hope that as God "reads these words over my shoulder" so to speak, He will find them pleasing as well.

The fact is, God has always been the "staff" the notes of my life have been written on. Or maybe it's better to say that the music of my life is written in the key of "G."

And the recent events of my life have only made me think of Him more. Made the fact that He is so important to me, even more prominent in my mind. Musing about meanings of life and death and everything that goes on in between, well for me, God has to be in there. What else could be??

But I don't ever expect anything I write here to make it into a book of sermons or anything like that. Though I must say that when I studied the books of Esther and Song of Solomon in Bible College, I remember our professors saying something to the effect that though the name of God Himself is not directly mentioned, the books are included in the Bible. Because if you really read them, you will see God is written in between every line.

And I think (I hope) that can be said of my blog too. God is the asphalt on my road, where those rubber tires meet it. He's not an occasional Sunday "pit stop." He is the road. Perhaps you might not notice, or even think of it while you are driving, but it is always there, making the journey easier, or even possible. I don't mention Him every time (again, some of you must be astonished! It would only seem like every time), but I can assure you, I never forget the surface I move over.

I guess the point is, this blog is about my journey. My journey would not be what it is if God were not here with me. But this blog is not meant to be about God. It is the story of my journey. God comes into as He comes into it. You, yourself, will either have to read between the lines if you are not sure He is there, or you will have to try to ignore Him, if you have no interest in Him. Though that might be hard, as He is the landscape in the history I'm recording. In any case, I have decided that I will leave that whole problem: too much God, or not enough, firmly in you, the reader's, capable hands.

So, now I will tell you, as best I can, why my blog is called "rainbows & earthquakes."

Of course, there are obvious connotations to earthquakes. I'm sure everyone sort of guessed that my life was going through numerous earthquakes and aftershocks. And yes, there is that.

There is a bit more to it though. The word "earthquake" has another connotation for me. It reminds me of a favorite story in the Bible, about a prophet named Elijah. God did many miraculous, amazing things with him and through him.

But he had an enemy that I bet every single reader has heard of in some way, a queen named Jezebel. It is an infamous name. And she killed a whole whack of guys who believed what Elijah believed, and sent a message to Elijah, that he was next.

This is all background, none of this is my favorite part.

My favorite part is that Elijah had this big crisis of faith. You might even say he had a nervous breakdown, and he ran away, fled for his life with his tail between his legs until he could go no further. And then he sat down and asked God to take his life, he was through with it!

Man, do I relate to this guy! He said, basically (I'm going to paraphrase here, read yourself if you want the exact words) "Look God, I did EVERYTHING for You. And what do I have? NOTHING. In fact, someone is trying to KILL me here!!"

And God sent a big windstorm, an earthquake, and then a fire for him to witness.

And do you know what? God wasn't in any of those things.

But at the end, God spoke to Elijah in a delicate whispering voice. I really can't explain to you, the way that strikes me, or how beautiful I think it is. But earthquake is a word that always reminds me, that when I am THROUGH. When I am ready to QUIT. When I see FIRE, and WIND, and SHAKING GROUND. That God has a delicate whispering voice just waiting to speak gently to me. And kindly turn me around and point me in the right direction, cause He loves me, and He's not finished with me yet.

And now you probably know where I'm going with rainbows... But here we go. Rainbows, quite simply, are reminders for me of God's promises. Because after the flood, God promised He would never flood the whole earth again. It is a reminder of God's promises which He always keeps. I can think of my own flood. I can remember that "darkness endures for a night, but joy comes in the morning. (Psalm 30:5)" The night seems long. It seems never ending at times. But I know that joy will arrive with the dawn.

There you go. Two explanations for my readers. One maybe unnecessary, and one done on request. I hope that you understood both of them, and I hope you maybe found some encouragement...

Shoes

How many times have we said it, or heard it said? Don't judge a person until you have walked a mile in their shoes.

I think most of us, at least, myself, anyway, have said it quite brightly and glibly. And with a lot of confidence. We are being compassionate and understanding people this way, and, of course, we don't actually have to walk in those shoes.

I actually think it is a sort of stupid expression, in fact. I mean, shoes? What do those give you? Blisters? Sore feet? Corns? Bunions? I know what the expression MEANS, it just seems to me that it lends itself to the more superficial.

How about "You can't know what it is like, until you have been in the same war?" Or "Reserve judgement until you've gone through an earthquake yourself." At least that would be a bit more serious, for the more severe occasions, no?

I have been thinking lately of the time when I worked with children with CP(Cerebral Palsy). I must admit, I think that I somehow felt, however unconsciously, that this somehow gave me immunity myself from having a child with special needs, or maybe "severe and life-threatening needs" says it more clearly. I might have had this vague notion that because I liked these kids and was warm and caring, it should be my get out of jail card from having this sort of thing affect my own family. I don't know. Maybe that is just hindsight. After all, most of us don't think something like this will ACTUALLY happen to us, no matter what we do. Hence the word "shock."

I can tell you this. I did admire the parents, and thought they were great people. I was also sometimes just a wee bit critical, deep inside of myself. That is not hindsight, just the truth. I think that I truly thought if I were the parent of those children, I would do a better job of making sure that physio and stretches were done everyday TWICE as they were supposed to. I was critical of them, wondering if they even managed half of what was needed, and then their children need painful surgeries and all that goes with it, because they couldn't put things aside for their child. Yes. I did think that way.

I had no idea. There is looking at those tiny little pointy toed high heels, and then there is actually trying to run the marathon in them. Two different things altogether. And chanting the platitude like a mantra will never actually drive that home to you, the way that, well, doing it will.

Now I look back on those parent's faces. I look back on their cheerful practicality while they talk about their child. How they seemed upbeat and confident and adjusted with everything. It sure fooled me then.

Now I wonder: Did they go home and cry in the shower that night so the other children didn't see it? Did they lie awake and sorrow over the future, desperately afraid of the eventual failure of their child's health and at the same time drained at the thought of having to take care of them until they were "old?"

I know more now. I received an education.
Now I know how anything LIKE a schedule can keep slipping out of your fingers until you sit in your pj's until 1pm in despair of every finding one for more than a day. Now I know how things like physio and stretches must constantly war with flu's and colds and Dr. appointments and all sorts of other difficulties, not just for a couple of days, but for weeks. Until it seems like the days with out it are more numerous than the days with it.

I wonder at those faces. What was behind those happy, friendly smiles? Oh, nothing sinister, I know they were not false faces really. They just didn't show the whole story. They didn't' show the sadness, the pain, the frustration, grief and sorrow and loss. Or maybe I just didn't see it. Maybe I wasn't looking. I don't' know.

I know a lot more now. Experience is a very harsh teacher, but boy, will you ever listen when she speaks. I'm not sorry I learnt these lessons. I am sorry that I didn't know more at the time, didn't see more, didn't care or love more...

But I know now. If nothing else comes out of this whole thing, I hope that I will forever see more, understand more and care more. I hope I will love more, and in that loving I will risk more, share more, and give freely, without reservation or judgement.

Brothers

Apparently it is time I wrote another blog, as my mother in law tactfully let me know I haven't written anything since the 12th of February.

Again, I have lots to say, lots to choose from, that is the problem. Hard to focus when you get so scattered in your mind. So, I will see if I can stay on track here and write something interesting. Well, of course, it will be interesting to me! Maybe you fellow PBD moms will relate to this too, if you have an unaffected child.

I often wonder what all of this happening with Joel is going to mean for my other son, Caeden. I wonder about the impact on him, and how it will shape him. If it will leave large scars, or if most of it will pass out of his memory, and thus affect him in more subtle ways, through the ways it changes Steve and I...

For one thing, the poor guy has a brother who can do no wrong. Literally. Joel can literally do no wrong. So while he gets hugs and cuddles and exclamations of how cute and sweet and lovely he is, no one is ever cross at him or finds his behavior unacceptable. No one sighs when Joel poops his pants. No one makes him say sorry, or takes away his favorite toy for throwing it in the house. No one tells him to stop fussing and act like a big boy.

I wonder if it is hard for Caeden, living that close to a "saint." The other day he told me that Joel had "hit" him, which was, of course, the most absurd twisting and stretching of actually fact that an elastic band couldn't do better. It was more that Caeden had deliberately brushed up against Joel as he was in my lap. It was a desperate, last-ditch effort to put his brother in the same position he often finds himself, on the wrong side of the law.

I hope that as he grows older and he understands more, this sort of sibling rivalry will end, as he realizes that Joel really has nothing to envy. I think it will, as Steve and I do shower down a fair share of cuddles, hugs, and praises on him too. Still, must be hard in the mean time, when you really haven't realized yet that your brother is far from an ordinary baby and that the fact that he never does anything wrong has more to do with the fact that he, well, never really does anything. And that the reason your parents are so ridiculously pleased when he makes a "w" sound is that they will never be able to have even the sort of conversation with him, that was possible with you when you were only 3.

So, in the mean time, I expect it is a bit difficult for him. And I expect, from time to time, Joel will be "accused" of things he is actually incapable of doing.

Caeden is male, and not to be too sexist, I think that possibly this may keep him from thinking too much about the more subtle reactions of other people. Maybe questions from strangers won't ever bother him. Or the bluntness of other children. I don't know.

Since I have no idea when Joel will pass away, I really have not got the foggiest idea what sort of grief/guilt/fear will be in his mind when it does happen. That is dreadful to think of, but I feel slightly more confident about it, just because I have always been very open and direct with Caeden. He trusts me and if he gets to mature just a bit more before Joel leaves us, I hope I can help him sort it out in a way that will heal in a healthy way.

I do worry about how all of this affecting Steve and I will affect him. I worry that we will become depressed and unresponsive, struggle with showing affection to Caeden, once Joel is gone.

Or that on the opposite side, once Joel is gone we will absolutely smother him with worries and emotional needs he can't possibly fulfill. That he will feel panic and claustrophobia from all of our love and hopes and expectations desperately transferred over to him.

I spoke with a young woman once, whose family had lost her baby brother at 10 months of age. I remember her telling me it made her mother very sad. So sad, that for a year she lived with an aunt. Her choice, partly, as her mother was too sad and it was too hard for this woman to be around her. She was just a child when it happened, though of course, a bit older than Caeden is now. She talked to me about how it made her mother sad, even to this day, at times.

So perhaps my worries are not entirely unfounded. I would be so horribly sad and regretful if, when I couldn't save one of my children, I then added large burdens to another.

I'm glad Caeden is a bouncy and outgoing little guy. He is not passive, he is a fighter. I hope this will stand him in good stead, through it all.

And I hope, when I am too sad or fearful, I will go to this blog and let it all out there. I hope I will go to good friends and mature family members and maybe even get professional support.

Even so, I can only imagine what it will be like for Caeden to lose a brother in this way...

May God use it all to shape him into a kind and generous soul. May God deliver him from temptation and let no evil thing near his soul, so that he develops character, not bitterness or resentment. And may God help me to be the best mother I can, and give me wisdom to love both my sons in the manner they need to be loved.

Morbid: Part Two - It's personal

I'm going to try and write part two of the blog I didn't really finish on Wednesday. I'm saying try, cause I am still sick, though from something new. And Caeden is sick too, and very whiny and grumpy. Well, I am whiny and grumpy too. Not a good combination.

I left off on my other blog, partly because I had written myself in a corner. I really didn't know, any longer, where I was going from there.

Here's the thing: I am going to write this blog, here and now, because now I can. Emphasis on the now. Because there have been many dark nights of the soul in the last year, and I know that there will be many more. And when they happen, you feel like I felt this weekend. In my mind and spirit, as well as my body.

During those dark nights, you don't have any answers. Because they are a fever, an aching in the bones and muscles of your mind and soul. You are laid right out. No matter what you knew before, you can no longer feel it, the ground has washed out from under you and it is really in this instance where your faith is truly "blind."

C.S. Lewis, a favorite author of mine, had a night like this. When his wife died of cancer. He wrote his struggles and questions in a journal. In this journal, this great man of faith says that though he is knocking at the door in his despair, God is silent. He starts wondering if the God he believes in is really cruel and vindictive all along.

The important thing is, Lewis doesn't stay in that horrible place. Later, when that dark night is over, God again "feels near." He says he realizes his dark wondering about God's cruelty were really his way of "hitting back" at God in anger. As the darkness lifts, he finds God waiting there all along.

This is all a long intro to what I have to say. I just feel the need to explain clearly about a few things. That I know that times will come where I am in a place like Lewis, in fact, I have been there before. When that happens, you might wonder at some of the terrible stuff I write. It is really important for both you and I to remember that what is speaking is, in a sense, not really "me." It is that dark, dark night. It is unspeakable anguish, but it will pass.

So now, while I can, while it is in me, I am going to write you about where I left off in the last blog. Because I was talking about those mental antibiotics, and then I said something about Jesus being the answer. On Wednesday I could no longer remember why. But now I do.

I would never deny that the best thing about Jesus is that he was a sacrifice for my wrongdoings. That is the best thing about Jesus. Here is what I think is the second best thing about Jesus. He really shows me who God is.

You see, when things get so dark, sometimes it feels like God is up far above me saying "It's not personal, it's just business." Like Joel and his illness is just a tiny little part of a vast cosmic system of suffering that God allows to happen, cause it's "business, not personal."

I feel so tiny and insignificant, just one of that great multitude of The Suffering.

But then, there is Jesus. And He is there saying, "It's personal."

It is Jesus, calling God, not only Father, but Daddy. It is Jesus, full of kindness and compassion, for the hurting people around him. He says he would like to gather the people of Jerusalem to him like a hen gathers her chicks under her wings. He comments on how all heaven rejoices at just one person who turns their life around from evil to God. He forgives the ones who pound the nails into His hands, and He tells the criminal on the cross beside Him, that He will see him later on that day in paradise. Jesus is personal.

All through Matthew, Mark, Luke, and John, I see the same message. It's not "just business." I'm not just a number to God. I matter to Him. My pain, my suffering, He sees it and cares.

The second best thing about Jesus, is that He brings God up close and personal. He promises, through it all, to never leave or forsake me. In fact, nothing can separate me from Him and His love. (Romans 8:35-39) That is the cure for my bleak and morbid thoughts, when I feel lost in the vast depths of time, space, and the suffering of millions. God sees me. I am important to Him. My suffering matters to Him.

The little boy with the light brown curls

Second post of the day. But I have this little boy wandering around in my mind, and I want to set him free here on this "page."

This little boy, with light brown curls. He is a very sweet, good-natured little boy. He follows his brother around with an innocent sort of hero-worship. Sometimes he flops down in defeat and aggravation when he just can't keep up with his older brother's antics. But he doesn't' cry. In a few moments, he is happy to just watch him once again.

He is chubby, this little guy. He is not a "go-getter" like his older brother, not full of energy. He is much more relaxed about life. He likes to watch things, and ponders them in that toddler way little ones have.

He is a cuddly little boy, not as outgoing as his brother, either. He does love people, and he watches them closely. He's not as talkative as his brother though. Not only does he watch people, but he is a listener too. I think that he is not really going to speak much, until all of a sudden sentences come out!

He toddles over to greet his daddy when he comes home, with a big smile and outstretched arms.

He won't grow up to be the sort of person who is ambitious, who gets things done. He's going to be laid back as an adult too. He won't get angry fast, he'll be patient, but when he finally explodes, look out!

People will say he is a nice guy, and he'll shovel the neighbors walks. Some people will think he is easy to push around, but when you get to know him, you will see that he can be quietly stubborn. And very loyal.

But there are years before that, and right now he is just a tumbly little guy, full of smiles and hugs.

Sometimes I see this little boy so clearly, just right in front of my eyes. Sometimes I just catch glimpses of him, out of the corners of my eyes.

This "other" Joel. The one that would be, if that 'little' error on that PEX gene could be corrected. He haunts me, like a melody that played in the distance. One that you can almost recognize and never quite leaves your mind.

It is a friendly, but sad little tune. I wish that I could hear it more clearly, hear it played at about 80 decibels, like the 'song of Caeden' plays in our lives most of the time. But I can't.

So I live with it played in the background. I see my little glimpses of those light brown curls on the back of that little bobbing head. They make me smile. They make me cry. They catch me in paper-cuts of surprise.

The people who love the solid, touchable Joel might get glimpses of this 'other' boy.

The rest of the world does not. They can only see one Joel, the Joel right before their eyes. But that other little Joel is a part of the one in front of them. He is the reminder that there is more to the Joel in front of us, than what we can physically see. He is the reminder that Joel exists as a person, a valuable person, who is more, much more, than the physical aspect that limits him.

He reminds us of Joel's spirit and soul. The true part of us, that makes us human and precious. I wish everyone could see that sweet little boy with those light brown curls...

Morbid: Part One

It's been awhile since I wrote here, which is odd, as I have about 5 different sorts of blog topics in my brain. Or maybe that is the problem!

Actually, it is more likely the fact that we have had a really nasty tummy bug at our house, and Caeden is the only one it missed. We are all still feeling the effects, and for me, those effects are not just physical, but mental and emotional. So on all counts, I have been "knocked out" and unable to muster up what's needed to put thoughts down.

And what thoughts illness brings out! The truly morbid ones, that's what. I don't know what it is about being sick like that, but the illness seems to affect body and MIND too. And it is not just my own sickness, but Joel's too. A double whammy.

Because Joel being sick always brings out the nasty thoughts. It gets so gut bustingly frustrating that I really CAN'T seem to move to a happier place for any length of time. Joel is doing well for a while and I start to feel better, to relax and let go of that nervous wire of tension that runs through my life and then - bam, he is sick again.

And why is that so bad, when every child gets sick now and then? Well, aside from the fact that Joel seems to get sick about 5 times as often as Caeden, is the heart-rending, and seemingly inescapable thought that THIS is precisely how Joel will most likely spend his last days.

Every time he is ill, the thought is there, haunting me day and night. I know that many (not all, but many) of the children with this illness will die from "respiratory failure" which most likely means that their bodies just declined until they could no longer fight off an illness. There are so many unpleasant ways to die with this disease, and being sick is just one of them.

So it's not that I think that way to die is especially horrible. Because almost every way to die from this disease is horrible.

It is just that when Joel's sick, I can't seem to escape the thoughts.

The thoughts that one day he will be sick, like he is now, and nothing can help or ease him. He will gradually sink further and further into illness, until there is so little of him conscious there. And then he will be gone. That is hideous to me. That in his final days he will feel worse and worse and I will not be able to comfort him.

And then I see, rising up before me in my mind's eye, row after row after row of mothers. Mothers from all ages and places. Millions of them, all who have lost their children. Because if you look throughout time and space on this planet of ours, you will find that the majority, (yes, the majority, not the minority as it seems here in this time and place) of mothers, of parents, have lost a child or children.

I see that sea of faces and I am just filled with sadness. It overwhelms me, the pain of humanity. So much loss. So much grief and longing.

And why should I be any different? About any of it? Why shouldn't I lose my child, when so many mothers do? Why shouldn't sickness visit us, or why shouldn't we lose our job or our home? Why shouldn't a flood wash us away, or an earthquake take everything from us?

There is so much sadness in the world, and sometimes I feel it all threatening to overwhelm me. These are the times when God seems far. Because trouble and pain seem so random and, well, so powerful.

These are the times when my own troubled thoughts threaten to pound through my brain like the surf until it just crumbles away like a sand castle.

Yup. Morbid. Plain and simple. The illness in my body is also an illness in my mind.

And I know it, too, will pass in time. Maybe I need the application of some mental "antibiotics." It isn't that anything I am thinking is untrue. Every single thought is spot on. It is just that it is not the whole story...

There is another part to it, and it is the story of Jesus. I am not done with this topic yet, but I am done with it now. I'll write part two another time.

Relief

I try to be so honest in this blog, but I still find at times that I sometimes leave out something. Not saying anything false isn't so hard. It is saying "everything" that is difficult. There are so many things we don't say or talk about, they are "taboo." Thoughts or feelings that are not condoned or acknowledge with others.

This blog is a bit of back tracking for me, through the past year with Joel. It is amazing to me, how I did love Joel, right off the bat and through it all. Really amazing. How I could somehow love someone who caused me so much pain...

So, I'm really going to lay it all out here in this one. Say some things that others might find really shocking or horrid. So be it. I never said I was an example to be followed, or some great person. I'm just a human being.

I did love Joel, right from the beginning, even though the rewards, really, were few to non-existent. I loved him despite the fact that I suffered an almost torturous lack of sleep. In spite of the fact that I was often, for months at a time, denied the satisfaction not only of his laughter, but even of his smiles. Or any acknowledgement at all that I was his mother. Many days where I doubted he even recognized who I was. I could not even see that my comforting him did him any good at all, but I still tried my best through it all.

Believe me, at times I thought about putting him in his crib and turning the TV on really loud and eating a lot of chocolate. There were times of lots of effort, lots of trouble and pain, and it seemed there was nothing to show for it. It is funny how we can love our children, because I still did love him.

But in all honestly, there were times were I had thoughts that if Joel would die soon, it would be such a relief. Not in a "I can't stand for him to suffer" sort of way. In a very much "I can't stand for me to suffer like this for years to come" sort of way. Truly, when things were so awful back in August, two things happened.

First of all, for the first time I found myself so empty that I couldn't even go to the doctor with Joel, or face the words I was so scared to hear said, that Joel's irritability and discomfort might be a result of his disease progressing. I heard those words second hand through Steve, and with a sickening feeling of confirmation.

Second of all, shortly after that, a feeling of relief. Whew. It seemed the doctors were all thinking his disease was just continuing to progress, we were referred to the palliative care doctors (though in reality, in their second role, of "symptom management.") I felt sadness and horror too, but also relief. Yes, relief. As if I were to be "let off" of a long prison sentence. Maybe it would "all be over soon." Maybe there wouldn't be years of tube-feeding, diaper changes, irritability, being always tied up with a slowly aging, but never developing child.

Yes, I am being honest. Along with all the pain, relief. Whew. One day soon I would go to bed with Steve and no worries about the last feeding, crying, puking, choking, medicines, etc. I would once again be able to go places easily. The three of us could go camping as a family. I'd have time and energy to fix my hair, get in shape, be a social person. The whole story of my life with Joel vs my life with out Joel flashed before my eyes, and the life without Joel, in all honestly, seemed much more attractive. I think, shocking as it may seem, that the secret answer to "Do I want Joel to die soon?" would have been, "Yes."

I apologize here to all the moms who have lost their children. I apologize to you all, because of course, this was all a bunch of bull. The fantasy of an overtired, over stressed, and in "shock" mom. Of course, as time has gone on, I have realized that the death of my son is not an "easy out." I apologize to you who suffer that loss, for ever thinking it would be. Joel's death, I can clearly see now, is not a mountain I will climb and get to the other side of. Joel's death is a passage into a whole new country, strange and grim. It is just an "out of the frying pan, into the fire" sort of escape. I realize that now.

But at the time, and with so little reward in any of Joel's existence in my life, it seemed so to me. And it wasn't totally selfish. If Joel had been happy, I would have felt differently. Joel had seemed to get so little pleasure out of being alive for that first 14 or 15 months. The bad months truly outweighed the good ones at that point, and I didn't want him to live if it just meant more of the same.

What a shock to me when he went from that to this happy aliveness in just a couple of months. Amazing. And I surprised myself by being so grateful, so happy, so relieved. I guess I never really wanted him to die after all. It was all just that terrible state of exhaustion, worry, sadness, suffering, helplessness, shock.

That was a big relief to me, because inside I had felt guilt for feeling the way I did. I always knew I could be a selfish person, here was my confirmation.

Then, when Joel "came back alive," I felt so happy and relieved, overjoyed really. And filled with a sense of wonder at that. What sort of lies was I telling myself, that I would be relieved if he died? It was nonsense. What I truly wanted, even if it meant years of diapering, feeding, physio, lifting into and out of a bath, etc, etc, was for my little boy to be happy. Happy and alive.

Even so, for all my gladness at these happy days, for all my gratitude, it is still tempered. Because I know that I will pay for every happy moment later. I can't help feeling it. The more we bond, the more smiles, playing, laughter, the more love and attachment. And the more of that, the more pain and longing and missing him later. These beautiful "crystal rainbow" moments, will one day shatter, and cut me all the deeper.

Still, I wouldn't trade them for the world. I am so grateful for them. The only things worth anything in this life, always have a cost to them. And often it is the price we pay which is what makes us truly realize what they were always worth in the first place.