Tooth

This time I think it is really, truly, actually happening! Though I have been waiting and wondering for months now, it seems like it is actually going to happen.

Joel is getting a tooth.

I don't know why that makes me absurdly happy, but it does.

I don't know why, but one thing that bothered me was the thought that Joel might die without a single tooth. It isn't really rational, I suppose, but these things can sometimes become supremely important and let me tell you

WHEN MY BOY GOES, I WANT IT TO BE WITH AT LEAST ONE TOOTH!!!!! I just didn't want him to die toothless!!

I feel like we have just won a small lottery. There is a tooth, I can feel the sharp edge, and the gum there is a bit "larger" than the other side. It is on the bottom, one of the front ones.

Maybe this sounds crazy, but it does seem like a victory! In just a few weeks, it will be out and it will be too late for him to die toothless! Ha Ha Ha! It is funny, but I feel I have won a battle with an enemy!

Of course, God willing, he might get a lovely full set of teeth yet. We don't really know how long we have with him.

And he can't EAT with it, of course!

So why all the joy? I suppose that what it really feels like is that he has passed out of infancy and into toddlerdom. He can not do any of the regular toddler things. No "toddling." No words. No stacking blocks, or any of those things. When did my baby turn into a toddler? Nothing ever changes for us. We are in the same place we were last year at this time, only HAPPIER. (don't get me wrong, REALLY grateful for that.) Still, as a mom... He has made no progress in holding up his head, he is not any closer to sitting, he is still just in the babbling phase, he still doesn't reach out for toys... Well, feeling you are in the same place a year later doesn't exactly feel great.

But today I am sure that something has changed! There is a TOOTH coming out! YAAAAAY Joel!!!

Apology

It is about time I wrote in here, yet so much has happened in my "emotional landscape" that I'm not sure where to begin...

Joel is back home and so happy to be here. He was nothing but smiles and laughs his first day back. I think he truly was giddy with happiness.

But he is a little trouper at the hospital. He does very little complaining or fussing. He doesn't usually even cry when he gets a poke anymore. He babbles away at the nurses.

It's not until he is home that you realize how he misses it. He never smiled at the hospital and he smiled at EVERYTHING when he got home. Of course, I think I did too!

I was so overjoyed to find that his main trouble was his tonsils, and once put on the steroids, his breathing went right back to being fine. I was pretty scared at the hospital, when we were wondering if it was his tone worsening, or his breathing centre in his brain (though it always seemed more like an obstruction.)

But I don't think I'll get into all that now. There will be plenty more times for me to go on about how scary it is to contemplate the vast chasm the absence of your child will leave in your life. Yeah. That chasm is scary... nuff said for now.

I will say that I apologized to my brother in law this week. I was spouting off to him about things and I said that we had gotten "shafted" by what happened with Joel. I can't say that I never feel like that, or that those feelings/thoughts never cross my mind. But I can tell you that they really don't hang out in my head too much anymore. So later on, I apologized for saying it. I guess the really correct thing to say is that I apologized IN FRONT of my brother in law, but really I was apologizing to Joel and to God.

How Joel feels about his deal in life is between him and God. I'm learning that it is just about impossible for me to really measure Joel's "quality of life." Most of the time he seems happier than some people I know who have everything. And the bad times make me furiously angry, and break my heart, but I have no idea really how it is for him. It is the mother bear coming out in me to protect her cub. Any suffering or discomfort would break my heart, and while Joel is a trouper and puts up with so much, still, I can only guess what life is really like for him, both on the good or bad side.

So I had to apologize to both God and Joel. To Joel, because more and more I feel so thankful and blessed to have him in my life. I have said it many times, and I will say it again for the record: if I could heal him, it would be done in the time it takes you to read this sentence. But I will say this too: if I could go back the two and a half years to when he was conceived, I would not change things. Not on my account. If the choice was no Joel, or Joel with a PBD, you know what I would choose. Joel was worth every single moment of pain he has cost me. He has given me so much, things I can not explain nor articulate.

Sometimes I hate to admit this to people. I am afraid that they will take this as a license to dismiss my pain and hardship. "Well, she says it is worth it, so?" So I have an urge to keep these thoughts that Joel is some kind of blessing to myself. Because when you walk through fire, you think that someone should be waiting at the end with a medal, some painkillers and a wheelchair.

The truth is, life is not like that. Here is a quote from my fav work of fiction "All the fairest beauties in the human soul, its greatest victories, and its most splendid achievements are always those which no one else knows anything about, or can only dimly guess at." And most of the things that God has worked in my heart, or soul, through Joel are like this. I had best just get on with the work of it, and stop waiting for applause! Only God truly knows the battles I face, and thus only He can truly appreciate the victories, though my dear fellow PBD parents come close to knowing.

So instead of waiting for others to "understand what I go through" I will say that Joel has been my greatest pain, but also a great blessing. Yes, I am THANKFUL that God let Joel in my life, even though I know the pain I will feel when I lose him will be something earth-shattering.

But my enemy is not pain. My enemy is not sorrow, or suffering.

I already mentioned in my reverse loss list, some of the ways that our souls get twisted up. These things are the real enemies. The things that twist us and deform our soul.

So I know that the pain, sorrow, suffering that I experience through Joel can make me empathetic as it teaches me to see others, can make me humble as I learn I need help, can make me grateful as I learn not to take anything for granted, can make me faithful as I learn to see God's faithfulness to me and practice being faithful to others.

Ultimately true evil, the kind that destroys the soul, is something that can only harm us when we let it in.

I watched a movie about the Holocaust "Charlie Grant's War. One of the characters tells his Nazi tormentor "If I had to chose between being a Jew or being you, I would chose to be a Jew. That way I would only have to burn once." Well, a shocking quote I suppose, but it has stuck with me. Because of the ring of truth. Physical evil IS dreadful. But though we can be hurt, we can not be harmed, unless we surrender ourselves up to bitterness, resentment, self-pity, or all the even more dreadful things that can lurk in our hearts.

So, I can't tell God that He has short-changed me. He didn't. God has allowed Joel to be terminally ill, because this could be made into something beautiful in His plan. He has allowed Joel to come to me, because Joel is a gift and a privilege and even a joy. He will allow Joel to die, because this will not harm Joel. Joel will be with Jesus. Joel's death will hurt me, very, very much. But I know in the end, it will not harm me. I'll be safe in Jesus' arms too.

Romans 8:35&37 "Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?... Yet in all these things we are more than conquerors through Him who loved us."

Emerg

You think about strange stuff when you sit in the emergency rooms in your local hospital. Like that Emerg and emerge sound the same, and are you in the emerge room, and where do you emerge from and what into??

Made me think of butterflies emerging from cocoons, and of metamorphosis and changes and all of that.

Cause I just spent a good amount of time in the emerg at Children's Hospital. About 12 hours, to be exact. And then I got to go up to a place that I actually had NOT been before, the PICU ward of the hospital.

Where Joel is being closely monitored due to the issues he is having with breathing during sleep. As in, he's not breathing well during sleep, and his oxygen levels are dropping and at times I have been worried that when his airway obstructs, he's just not going to bother trying to get another breath forced in there. Yeah, a real barrel of monkeys. (sarcasm, that lowest form of humour, which tends to come out of me when I spend too much time trying to be cheerful and funny in the emerg, or emerge room)

But in some ways, I can't really hate the emerg at the hospital. I say I do, cause NO, I do NOT what to spend any time there whatsoever, but it is really a sort of love/hate relationship.

Because you sort of feel, once you get there, that everything is going to be ok. The nurses are cheerful, the staff tries to make you smile, the lights are bright, the place is bustling with medical people trying to help you. So you sort of feel, now that you are there, its ok.

Not too logical, really, given the sorts of problems that can land you there. I don't know why being hooked to a monitor makes you feel like breathing is being taken care of, as breathing can still stop at anytime, and it is really anyone's guess if all the king's horses and all the king's men can put it back together again.

Before I type too much more, let me say that I think Joel is going to be ok. I THINK so. Or maybe I think so is more correct. Never any guarantees, so you gotta know that I am worried. But the best info so far would suggest that they can clear up the breathing problems and things will be ok.

Which is good news, because for a kid like Joel, that is not always the case. Which is what that icy tingle I get when I really think too much about it is reminding me.

But I am thankful for the emerg. Cause they always take things seriously, they never just send me home as if I am over-reacting. That is a relief in itself. Though scary too. I mean, sometimes it is not a bad thing to be told you are over-reacting!!!

And of all the doctors Joel has, I sort of feel like the emerg people usually have the clearest picture of the whole of Joel, if you will. Ped sees him for "everyday" stuff, and sort of sucks at anything else. Metabolics knows all about, well, metabolics?? Neurology knows about the seizure stuff and MRI stuff, but not really the whole picture of Joel. It is those emerg staff that actually seem to be the ones who put it all together into one.

The nurses are great too. This time they did their best to keep me from utter insanity as I sat by Joel staring into space as we "monitored" Joel together for about 6 hours. So they asked me all about his illness, and what it was like for me and stuff. Let me cry a bit, or crack weak jokes and then laugh like I was really this totally funny comedian on "Who's Line is It Anyway?"

This is one of those long wandering sort of texts, and doesn't seem to fall too much into any one neat little topic, like some do. That's cause I am taking you with me now into the darker places. I did warn you that life with Joel would take me (and thus you) there. See, I did know it was coming, and if Joel does ok with this one, then they are just coming once again, but we are not going to escape from them. The dark times are unavoidable.

It is usually the best thing to buck up and face them head on. That is what I find. Sort of like when you are going to rip a band aid off. Or when you are feeling sick, and then you get that knowing feeling "Yup, I am really going to puke in a couple of seconds." Or see the dentist or go into labour or what ever it is. You can dread it and shrink from it.

You can do like my little guy, Caeden, did when he had to have eye drops for his pink eye. He fought, kicked, screamed, and cried while Steve held him down and the drops went in. In the end it was a big fuss to no effect. Those eye drops were going in anyway! You are going to puke, regardless! That baby is coming out! You only seem to make two horrible times out of one for yourself. Now you are still going through the pain, but you are also going through the writhing, squirming, useless but horror filled efforts at avoidance.

So every time something like this happens, every time that darkness hits and I have that "It's all hitting the fan" sort of feeling, I try to straighten up. Grit my teeth. Refuse to think about how horrible it is going to be, and just do it. Get the job done, and try and find some guts lurking somewhere in my shrinking body.

So where is God in all this? Honestly, sometimes He gets a bit forgotten in all the fervor of the events. Darkness can be an oddly busy and distracting place. Sometimes it is dark, but it is still loud. Like lots of thunder, but no lightening to brighten up the sky. Still, He is there. Want to know another really weird thing that came to me in emerg?

Besides emerg, and emerge, and butterflies?

It was part of a favorite song. It is really beautiful, so I'm going to write the words here for you.

The river of God
is teeming with life
and all who touch it
will be revived.
Those who linger
on this river's shore
will come back thirsting
for more of the Lord.

The river of God
sets our feet a dancing
the river of God
fills our hearts with cheer
the river of God
fills our mouths with laughter
and we rejoice for the river is here.

So there you go. "In the night, His song shall be with me." (Ps. 12:8)

Emerg. Emerge.

Loss List, in reverse

If you couldn't find my last blog, it appears waaaay back on Jan. 8th, when I first started writing it. Any of you fellow bloggers know how to put a blog where you want it, instead of just published according to the date you started it??? It was called "Grudges."

Awhile back I put up a blog called "Loss List" where I listed just a few of the things that I have lost through Joel's illness. This loss list is in "reverse," because it is a list of things I am happy not to receive. Yup, you heard me right. I'm happy NOT to have these things.

This list doesn't undo the pain and loss in our lives. It doesn't really "make up" for what we are suffering. And on the really bad days, it will be very small comfort.

Still, there is another side to all of this. Another way to look at things. I am still grateful, because even in all the pain, there are things we are spared.

So, this is a list of what Joel has been spared. I hope you don't find it melodramatic, because every thing listed here is something that thousands, or even millions, have gone through. I hope you don't find it depressing, in that instead of listing the great things, I'm listing the bad things that don't happen. But maybe, when we are tempted to say "why me?" it is good not a bad thing to think of these things. Maybe even get off of our self-pitying rear ends and do someone else some good...

So here we go...

Joel will never have his marriage ripped apart by a vicious divorce. He'll never worry his ex is going to get the kids and turn them against him, or sit alone in a small apartment thinking about how his vows crumbled like a dry biscuit.

Joel will never be an alcoholic. He'll never be unable to remember the events of the previous week, or have the shakes. He will never ruin his life, and even worse, bear the guilt of ruining other lives by driving drunk and killing someone.

Joel will never lose a successful career and happy home due to committing a white collar crime and being caught. He will never have to spend time in jail.

Joel will never be a confused teen from a dysfunctional home, who runs away to the big city full of hopes that are dashed as he ends up trapped in a life of addiction and prostitution.

Joel will never love an abusive woman. He won't suffer under emotional devastation or physical hurts from someone who is too broken to know how to love him.

Joel will never be kidnapped by military groups that force him to learn to hate and kill before he is fully grown. No one will slowly rob him of his soul by brainwashing him and forcing him to commit acts that even adults should not have to see.

Joel will never watch his family slowly starving to death around him, no matter how hard he works, he just can't raise enough to feed them, and he knows that the littlest one won't make it.

Joel will never spend his years in fear of when an abusive father is next going to explode and hurt him, or his mother. He will never be emotionally crippled by this, twisted by his experiences so that he doesn't know how to be a husband or a father.

Joel will never be ostracized because he is the "wrong" colour or race. He will never feel the scorn, disdain or hatred of another, more powerful group of people. He will never suffer the injustice this causes in his daily life, work place, choices.

Joel will never grow up neglected.
He will not be one of the MANY, MANY children in this VERY CITY for whom many of these things are true:
He will never be three years old roaming the streets at midnight.
He will not live in a home where the mattress he sleeps on is used, at times, for his mother's prostitution.
He will never go to school with only a parka, and no shirt underneath, and be so embarrassed when the teacher asks him to remove it.
He will never be hungry most of the day, and come home to see the welfare check was used to buy alcohol.
He will never have to be the parent to his younger siblings, because the parents are more like children themselves.
He will never feel the terrible emotional pain felt by these children when their parents just plain fail to love them, in all the ways that parents should.

Joel will be loved. He will be held and cuddled. He will never have to cry without comfort. There will be singing, and smiling, and laughter. He will be kept clean and warm and secure.

Despite all the suffering in our lives, I have seen many children who are not even close to as happy as Joel is. He has lost many experiences, but not all of those experiences are ones you'd want to have. Physical suffering is a horrible thing, but there are other, worse things out there. Things that not only hurt us, but twist and deform us.

When ever I feel sorry for myself, or when Joel's suffering starts to enrage me, I think over these things I've written. They put things into some measure of perspective.

Because in many ways, Joel has a very blessed life. I am so grateful that I get to be the one to love him. I will make sure that he always feels this.

Pressure

It looks like Joel will finally be going in for his MRI. We first asked for this MRI back at the end of August, so it has been a very long wait. And now that it is almost upon us, I wonder "What am I expecting from it?"

Yeah, I still know why we wanted it done. And I always knew that it may not really show us much, or even be that accurate. I know that it will help us make decisions, if it shows anything "clear cut." Like if Joel's brain doesn't show any changes from the last time, we'll be more sure planning a vacation, or leaving any DNR decisions off. Though we will always realize that things can change very quickly, so it isn't really a guarantee. But like I keep trying to explain to the docs, I'm not looking for a GUARANTEE, I'm looking for a TOOL to use when making decisions.

And if Joel's MRI comes back looking like Swiss cheese, well, that will help us a bit too, though it will be very difficult to hear.

But it might come back showing only slight changes... What would that mean?

And no matter how it comes back, this weird disease can always surprise you, for good or for ill.

This whole MRI think is just one super-sized tangled knot. And all the kerfuffle the whole question over anesthetic brought about hasn't helped. It seems no one ever can agree on what the best way to get Joel to sleep really is.

So when the MRI department realized (because believe me, almost no one ever actually reads Joel's 3 inch thick file) that Joel has 1. low tone, 2.reflux, 3. is fed by g-tube and not by mouth, they just about flipped out. It appears that Joel needs A LOT more bells and whistles for his MRI than other children do.

The big concern is that with low tone he might have difficulty swallowing, he might have reflux (though his tummy is empty), he might start choking in that big MRI machine and no one would know until he was dead. Yup. Funny thing is, while this at first seemed a bit of an over-reaction to me, later on, the more I thought about it, the more I too was a bit concerned...

Thing is, I never really do know exactly where Joel stands with his health. I mean, that is how it is with a degenerative illness... The first sign that Joel is having trouble breathing just might be that he stops breathing during an MRI.

I am so used to living all of life with risks, and I don't even know anymore which ones are the "serious" ones to look out for. I mean, I am much more afraid that Joel will get pneumonia from one of the many colds/flus that have gone through our house lately and that is how he'll die, then on the slight chance he'll have trouble during the MRI. But, if his tone is so low that pneumonia is a valid fear, maybe so is an anesthetic??

In any case, we still send Caeden to nursery school, that den of swarming germ propagation. Because if we are living in a bubble, are we living at all?

But here is the pressure for me. As the mother of a healthy child, I know that other mothers all face guilt and regret every day because they didn't handle something the right way. You know what I mean. You screamed at your child, instead of speaking calmly. You laughed off their ridiculous fears, instead of reassuring them. You told them you were sick of their whining, and then they puked and you realized they really WERE sick. All those many things moms feel bad about later. Too many to count.

Now that I have Joel, that pressure is ten-fold. Because his health is so complicated and so precarious and ???? I don't even know how to describe it. It feels like there are so many "mistakes" that could be made that shorten his life, or lower its' quality. Was I vigilant enough on getting his vit. K levels checked, or his adrenals checked for deficiency? Is eye surgery more stress than it is worth? Do the seizure meds need to be changed? With every infection: "Should I take him to the doctor now? how about now? Or now?" Even though he has been sick many times with out needing to see his pediatrician, every time I still worry that THIS time is the time that it is serious and should be checked out immediately.

Just about every day I remind myself that Joel's death will NOT be because of anything that I, Steve, or anyone else involved in his care, did or did not do. I remind myself that Joel is dying of an incurable genetic condition, and that though a secondary problem might be listed on the cause of death, his death is ultimately inevitable, and no one's fault. This disease IS FATAL.

That is why I hate it so much when doctors and medical staff make such a big kerfuffle about it all. It's not that I don't want the best possible care. It's not that I wouldn't do just about anything to lengthen the number of Joel's days on earth. I'm sure not trying to get rid of him.

But I already battle with walking on eggshells every single day. I am delicately balanced up here on this tightrope of "reasonability." I am constantly fighting my fears and apprehensions and questions over every single health related decision (trust me, there are alot of them). So when they get really hyper about stuff, it is really stressful for me. It adds to the pressure I already feel... And it makes me feel like a bad mother, for even asking for such a "risky" procedure as an MRI!!

There is no solution to this... It is just a battle I will fight until Joel is gone... and maybe even after. Letting go of guilt, and a misplaced sense of responsibility for how Joel is doing. In the end, I have to leave it in God's hands. I'm just human, and ultimately, God already knows everything about Joel's life and his death. I might make mistakes. But God is watching out, and I try daily to remember that.

Blogosphere

First of all, a big thanks to anyone who responded to Steve's blog with some encouragement. It was much appreciated.


One thing about Joel's disease, it has connected me to some of the very nicest and best people. I would start to list them all, but then I would accidentally leave someone out because my brain isn't that great, and then someone might have hurt feelings, even though it was accidental. So, I'm not going to do that.


But I do want to point one person out, cause she too has a blog. Her name is Jen, and she has a little girl named Lydia Eileen who has the same condition as Joel does, only worse, if you can believe it. And I have her blog listed on my blog, now! So if you are interested, you can read about how things are with Lydia. And if you are a praying person, you can pray too.

Cause I'm just going to be blunt here. Lydia is really not doing well. Jen and her husband know that she really isn't going to live much longer. But in the meantime, Lydia is having these awful seizures, and they just can not get them under control. ("They" meaning the doctors.) These seizures are distressing for Lydia, and distressing for mommy and daddy. So if you pray, please take the time to pray for them, and for Lydia, most especially that she can have some peace from these seizures and some good and happy last days.

From Jen's blog, I got onto some other really good blogs too. I put two of the ones I personally wanted to follow, up on my blog too. I realize more and more that the world is full of people who are hurting, who are grieving and in pain. Of course. Like this is news.

So these blogs are sad. Pearl Music is written by a mom who just lost her baby. He was premature, and stillborn, due to a gene defect. Waiting for Morning is written by a mom who lost twin girls, about a year and a half ago. They were born very prematurely and did not survive. Yeah. Pretty heavy, sad stuff.

But I like to read them. I like to read them, because even though they make me cry, I love the honesty. I can relate to the pain, though the circumstances are different. Let's face it, pain is pain. Truly. When you get right down to it.

We human beings like to sit and count our wounds, thinking, even when we don't verbalize it "My wounds are the deepest. My battles are the hardest. No one else REALLY gets it, because they have no idea about THIS kind of pain." Come on, I know you do it! I know you do it, cause sometimes I catch myself doing it too!

But more and more I see, that pain is pain is pain. Sure it is great to find someone who shares the same exact circumstances. They can understand in a special way.

But when it all comes down to it, pain is terrible and excruciating and horrible and seems never ending. It knocks you out and knocks you flat. It throws you into pits of mire and slime of depression, self-pity, and apathy. It wears away at you til you feel like sandpaper has polished all the words off of you. It makes you feel like you can not breathe, it makes you feel like you can't stop gasping for breathe, like a suffocating fish. It is a surprising stab, it is a dull, throbbing ache, it is both at once. It makes time your enemy, it makes sleep an elusive, much sought opiate, it makes life a sickly sweet pastry that you want to puke up as it sits so heavy in your stomach.

I hope that is not too graphic for you, but if you can relate to anything in that above paragraph, I think you can relate to me, no matter what your circumstances are. Many things are individual, but some things are universal.

And so I read these blogs. Not just because they are honest. Because they also fill me with hope. I see that while some battles are lost, for the most part, I trust the war will be won. One of my favorite books of all time says "Other people have passed this way too, and they even learned to sing of it afterward." And that is what these other blogs make me feel inside.

So, if you are interested, take a look. But you can't stop reading my blog. No matter how good these other ones are, you still better read mine!!

Hoarders

There is this show I like to watch. It is a reality tv show, so yeah, I guess you could label me as a voyeur. I prefer to say that I take a keen interest in human nature!

Anyway, the show is called "Hoarders" and it is all about these people who are dysfunctional in how they relate to the stuff that comes into their possession. Yup, you guessed it, as the name suggests, they "hoard." Any material thing that comes their way they must hang onto.

The dysfunction becomes so strong that some of these people are threatened with eviction. One family had the worst case of bed bugs, but the exterminator refused to fumigate because the huge pile up of things made it virtually impossible. One couple bought a second home, in the hope of moving out, cleaning out the first home and selling it. Instead they ended up with two houses bursting at the seams while the banks threatened to foreclose. Others have children removed due to unsafe conditions, yet still can not seem to let go of the "stuff" that surrounds them.

It seems so frustratingly obvious: have your real life children, or be left alone with all the old baby clothes piled up around you; throw out the trash in one home, sell it and keep one, or lose everything, etc, etc, etc. It seems so obvious, yet many of these people can't even see that they have a problem. Pretty crazy stuff.

Course, most of us have the hoarder in us... Just in more socially acceptable ways. I know I have a whole drawer of old cassette tapes that I have not listened to in over a year, but?? I can never seem to throw any out. Steve has TWO pairs of army boots, that he doesn't wear, but couldn't throw out cause "I still use those to dress up for Halloween." (I think I might have finally persuaded him to throw one pair away.) And why am I keeping old letters from friends I haven't heard from for 20 years?? If the friendship didn't survive the time and distance, why have the letters??? I mean, it is hard sometimes to let go of stuff, even when we end up sacrificing a relationship to keep it.

And its' not just a lower or middle class sort of problem. I mean, I was reading online about some of these sports millionaires who make millions and then lose it all. One of these guys had built this huge house. It even had its' own bowling alley. Steve did the math, and it was, in total, the size of about 54 of our house. Now really, isn't that hoarding too?? When you have to have soooooo many rooms in your house that you can't afford the payments for things like electricity and water??

So we sometimes all have things that we value, things that we hold onto, despite the fact they might not be worth it, or that holding onto them might actually harm us more than do us good.

This all got me thinking. You see, most of these people live very lonely lives. Lonely because they just don't have room, literally, for other people. They can't invite people over to their house, and I guess after awhile you stop going to visit other people out of shame, or they just stop inviting you.

Then I was wondering, which came first?? Are they lonely because they hoard, or were they so lonely in the first place that they tried to fill up the space with things?? Maybe a bit of both??

And I thought about myself. I don't hoard things to the point of obsession, but I have been, well, to admit it "out loud" - lonely. Yes. Since Joel has been born, I have been lonely quite a bit. And sometimes I fill up the loneliness with things that are not really that great. Like TV, or video games. Not too good for my fitness, granted, but one thing about TV. All the noise, talking, discussions, information, tv people, it is a great panacea for both boredom and loneliness. And video games, electronic games of any kind, they really distract you and keep you from thinking too much.

Unlike cleaning. Or folding laundry. These are activities which, in my case anyhow, invite lots of reflection and thinking, then comes boredom, finally - loneliness. So these activities tend to happen on the better days. The ones where I feel pretty good, upbeat, energetic...

I don't know exactly what I am trying to say here. See what too much time thinking does??? This is what happens when I stop WATCHING the tv show "Hoarders" and start THINKING about it!!!

Grief is every bit as isolating as hoarding is. You can really feel alone with your life. And being somewhat "housebound" doesn't help much either. I really miss having a best friend. Yes, I have Steve. Yes, he is a friend who is such a good friend I can call him "the best." But, well, in case you haven't noticed, he's a man. Which is a good thing, when it comes to husbands. But I greatly miss having a person who comes over at least once a week for a "chat." Or to giggle with as we watch a silly, girly movie. I've got a lot of good friends from the support group, but I really, really miss having an "in the flesh" sort of friend.

What am I saying? Hey, it's lonely out here!!! Anyone want to come over for tea and a chat?

A Father's Thoughts

Hi, I'm Steve, Karen's husband.

I asked Karen a few weeks ago if I could do a guest entry on her blog and she was, at first, very reluctant. If fact, she pretty much refused. Since then, however, she's been asking me when I am going to do it. So here it is.

Joel has been both an extreme blessing and a gut-wrenching heartache for me. Karen's blog title, "Rainbows and Earthquakes", actually says a lot in those three words.

Let me talk about the earthquakes first.

Everything went so well with my first son, Caeden. I was there for his birth. I cut the cord. He was always healthy and way ahead of all his milestones. After him, I wanted more kids. Being a parent was so easy and such a joy.

Things with Joel did not go well right from the start. I was there for his birth. It came fast. There was maconium in the amniotic fluid. Doctors took him before I could cut the cord. I was not allowed to hold him until the doctors finished checking him. I never did get to cut his cord.

His fontenell was incredibly large. Two weeks into his life he had episodes in which he stopped breathing and was rushed by ambulance to the hospital for the first of his many stays in the hospital. He stopped seeing at three months. He was diagnosed with an incurable disease that will slowly kill him.

At about the same time as Joel's PBD diagnosis, my wife's sister, herself a mother of two, was diagnosed with lymphnoma cancer and a few months later her father was found to have leukemia. The world seemed to be collapsing for our extended, but very close, family. I had a stressful job teaching inner-city kids and now my homelife was even more stressful.

I had never been a grateful man before. I always looked to what I wanted and didn't have rather than to what I was blessed to have. I had always felt that God picked on me. I was the ant and God was the mean kid with the magnifying glass torturing me.

If I stepped out my front door, looked up, and saw a meteor hurtling down to land, out of all the infinite places of the vast universe, on top of me, I think I would have said as my last words, "Yeah, that's about right."

Now for the rainbows.

Karen's sister and father are cancer-free now. My job isn't as stressful.

I have never led a cursed life as I once thought. I grew up in a loving Christian family with a wonderful father, mother, sister, and brother. I married a good Christian woman who has shown more love and less selfishness than any woman I have ever met. Things have not always worked out the way I wanted them to but I have been very lucky they didn't.

My journey with Joel has opened my eyes and changed my life and world outlook more than anything in my life before. I went to a leukadystrophy conference in Chicago last year and saw so many other parents who have suffered so much more than myself.

My concerns before Joel revolved around the car I drove, the electronics I possessed, the size of television I watched, the possessions I could afford, what others thought of me, the places I could travel. Now it is hard to believe such childish concerns once could upset me.

Joel has taught me how fragile and how precious life is and how unconditional love can be. Many times after work when others went home or out on the town I went to the hospital to stay with Joel. We spend hundreds of dollars at the drug store. We have held Joel for many hours of the day. He has kept us housebound and cost us many nights of sleep.

Yet we love him so much. I love him so much. Piddly concerns about entertainment and material possessions seem so distant now. I am actually much happier and more content than I have ever been in my life. I look at Joel lying in my arms and I'm just so happy when he is happy and not suffering pain or having a seizure or sick.

I used to act in theatre and dinner theatre on Prince Edward Island to raise money for the Children's Wish Foundation but I never fully could comprehend being a parent of a terminally ill child. Now I can.

To accept that you cannot provide your child with all the life experiences that she or he should enjoy causes parts of yourself to die. Not just as a parent but as a human being. I have taught cistic-fibrosis kids who know they are going to die before their 25th birthday yet never fully understood that pain as I do now. I am grateful for the deeper understanding.

I love Joel. I love what he has brought to my life. He can cost me time, money, sleep, and rip my heart out of my chest but I love him no matter what. I love holding him. I love the sounds he makes. I wish I could do more for him but I am content doing what I can for him.

Harder times are ahead. I know that he will die and that I will bury my son. I will always love him and I will never regret having Joel in my life.

Joel is my son. He is a human being. He laughs. He cries. He gets annoyed. He has likes and dislikes. He gets scared when he chokes and is happy when he is comforted. He will always be loved and always be remembered.

I have a poem in my head called "Cute little guy, Doomed to die". It's a bit morbid but when I finish it I would like to share it.

Baby blues

Everyone is pregnant! Well, that is how it seems anyway. And I must fight not to feel too envious when I see those distended bellies or wise, old newborn eyes in those sweet baby faces.

Because I want another baby. I do. I thought Joel might be my last one, and I was all set to enjoy it to the utmost. But that was taken away from me. There was no happy babyhood.

I didn't get to nurse a happy and contented wee little babe. Eating was unhappy, troublesome, and fraught with difficulties right from the get go. I didn't get to enjoy that beautiful, miraculous time of watching a person unfolding so quickly, like time lapse photography. Crying, cooing, babbling, talking. Holding up head, sitting, creeping, crawling, cruising, walking. Just like a flower, in fast motion.

Of course, I got to enjoy it once. I am grateful for that, some women NEVER get to enjoy that, don't think I'm not grateful for getting it at least once.

But you might as well waste your breathe telling a heroin addict he "already enjoyed" one hit, and so he should just be happy with that. I just want that wonderful, beautiful, splendid, breathtaking miracle ONE MORE TIME. Can anyone blame me for that?

Steve has always wanted 3 kids, and I was up for it as well, though with some reservations, due to the fact we didn't start our family til I was 36. For sure, absolutely, we wanted at least two.

Now everything has changed for us. I mean, we still WANT that. But nothing is simple or easy for us anymore, and this part of life especially so.

So we toss about our options, none of them seem that great...

But some seem "workable."

We both know we could never start a baby we didn't finish. And with a one in four chance of another sick baby, the odds are just not good. So that puts "natural" means out of the running.

Then there is sperm donor. It might work, though it is expensive and has it's own host of difficulties. How long would it take, as costs soar... What would or wouldn't we tell, and to whom? Would everyone understand if they all were told? What about the child? When/how would we share the details of how they were conceived?

Adoption is also a long, difficult, and somewhat expensive project. And brings us to the crunch: would anyone approve our home for adoption when we have our hands full dealing with a sick and dying child? Just thinking of that makes me feel guilty for even asking for another child. After all, adopted or created with sperm donor, either way we are bringing a little one into a home with stress, worry, and grief...

I don't know what we will finally decide. It is all up in the air. And I really hesitate to write this next part. I really don't know what will be possible for us in the future, so I hate to think that what I am sharing might never come about. But I will risk it and be honest.

There is another song singing in my heart lately. I've been thinking about adopting an older child, somewhere between 3-10. No, this would not be a baby, and I still wouldn't get to watch that beautiful time that is babyhood. But a child who needs love as much as we have love to give would find a home.

You can't interject with any objections here, ha ha ha, but I can imagine them. Believe me, I fully realize (as much as you can until you are in it) that this also is fraught with difficulties. I know older children bring with them many scars and bruises, and not all of them are "fixed" by time and love. An older child could only add to our already stress filled existence even more stress. I know all this stuff.

But I am hearing this song, singing in my heart. "You are wanted. We wanted you. We looked for you, and found you, and choose you, because we wanted you. Come into our home, our family, our life, and we will love you. You will be our child, and we will always and unconditionally love you." I know there are lots of little boys and girls out there who have never heard this song before. Shouldn't someone sing it to them?

And underneath it all, and mingling in with this song in my heart, I can hear another song. A deeper, stronger, but quieter song. I can hear God's song, singing to me "You are wanted. I wanted you and I looked for you and I found you. I rescued you with my own life, and I will love you always and unconditionally." God's adoption song, playing underneath the one I hear in my heart. Such beautiful music, playing in harmony.

Fine Dining

We just got a new dining set, mostly due to the generosity of my in-laws. Even Steve loves it, and he is usually not that enthused about what happens in our home connected to decorating or furnishing.

It is big enough to seat at least 8 people, 10 if you squish, and we can finally see each other's faces while we eat. I could not believe the amount of animated discussion that was generated in the table's "atmosphere," compared to previous levels.

And it is beautiful. Really, I can almost get gushy about it, and I gotta tell you that I still run a loving hand down it when no one is looking.

The funny thing is, the dining set almost inspires in me behaviours I normally don't have urges about. Confession: I almost left the plastic on a couple of the chairs for us to "use everyday." I had guests over and almost gave in to the urge to make them all use plastic place mats for their coffee cups. What is happening to me?? Don't worry, I didn't do either of those things. I staved off those impulses because Joel has taught me a lot of stuff, and one of those things is to use the fine china.

Yup. Use the fine china. Live a little. With Caeden, I "saved" the nicest clothes for "special times" and he wore a lot of second hand "play clothes" at home. Now, I am not saying there is anything wrong with play clothes.

But when it comes to Joel, I realized "What am I saving the nice clothes FOR?" It's not like he's going to an evening at the Oscars! And I decided, I want my little boy to look cute FOR ME. If his life is going to be so short, and I don't know what day will be the last, I'm going to only have memories of him in nice clothes.

So Joel only wears the second hand clothes that I REALLY like. My favorites from Caeden, that survived his attempts to stain them with blueberries and the like. And he wears nice new outfits at home, if I feel like it! We are going to "live a little" on this one!

Sometimes it is good to "save" things for a later day. Be fiscally responsible and save some cash. Of course, we should take some proper care of our things. Hey, I could to better with some of this stuff.

But sometimes we need to live a little. Worrying too much about saving things for tomorrow, or keeping them pristine can rob us enjoying them right now. Like being afraid all the time about getting scuffs on the dining table, instead of enjoying hosting family and friends.

Which brings me to "me." Or more precisely, my own body. It sure isn't in the condition it was in 10 years ago. I mean, there are scuffs and marks everywhere, and I feel like being Joel's mom has aged me about 10 years in just a year and a half. More gray hairs, some lines of sorrow...

Not to mention the stretch marks. And let me tell you, to say that having children has "changed" my breasts a little bit is quite a euphemism. I was never a great beauty, but I used to feel I was physically attractive, maybe even "cute." I feel a bit sad to think of it all...

Then I think about it some more. About how my body and my dining room table are sort of the same. I mean, what would trying to endlessly preserve either of them do? Not that a smart haircut, or a few new clothes aren't worth it, and I still WILL POLISH the table with wax. But with use, comes wear and tear.

I was never a candidate anyway, but it seems to me the world has enough models and movie stars. I'm not really sure it has enough good mothers, or selfless women (I'm not a candidate for that last one either, but!!!)

It is hard, in this world of preservation, of constantly trying to maintain youth and beauty, not to sometimes feel bad about what time and use have done and continue to do to your body.

But I am glad I took the plastic off my chairs and off my lap. Every scuff and mark on my body or my table is worth it to make a happy and comfortable, welcoming home. Some of those wrinkles growing here are smile lines.

And when I am 85, I hope I will look at the marks on the dining table and see lots of dinners full of laughter, remember lots of cups of amiable coffee with friends, be cheered to know my home was known for hospitality and not perfection.

And when I look at my "marked up" body, I hope I will see two happy little boys who adored their mother, wrinkles and all, and remember the beauty of feeling those little kicks when I glance at the stretch marks. I hope it all reminds me that I used the good china, wore out the "nice" clothes, and "lived a little" in my own body, in the best possible way...

More affirmation

I really wasn't going to write another blog. My respite worker is here, managing the boys, and I was fully intending to get something accomplished today, that something being things like laundry and cleaning, not sitting and writing blogs.

But I just have to get this off of my chest. I was cleaning the kitchen with more and more vigor as the thoughts just wouldn't rest in my mind. I just had to get it out.

So, this blog is linked to the previous one, but it springs up from two separate events. Two things that sent a cold breath up my spine, that left me feeling a bit seasick... or perhaps heartsick says it better...

Like my husband, I studied quite a bit about the ancient Greeks and Romans in university, though he was interested in conquest and strategy and military might, and I was more interested in the social side of things. Both civilizations are very interesting studies, but I certainly wouldn't have wanted to live in them.

For one thing, if Joel had been born in ancient Rome, he most likely would have been taken out of the city and left out on the top of a hill, because that is what the Romans often did with children that were unwanted for any reason, but especially if they were sick or "defective" in some way.

That is pretty horrible, and I can't think about it with my heart too much because the picture it leaves me with is as hideous as a Gorgon. You might think it is because the Romans were "less evolved", that somehow they just were not as civilized as we are. Which is, ironically, exactly what the Romans thought of most other civilizations. But if you read some of the things they wrote, and learn about how advanced they really were, I think you'd see they might be more like us than we would like to admit.

Not that we leave wee babes out on hills, but...

There was a story in the news, way back months ago, about a two tiny little baby girls. One had a defect in her heart and was going to die without a heart transplant. One had a genetic defect called "Joubert's Syndrome" and a part of her brain that regulated breathing was missing. It was a very serious defect, and children with the syndrome are quite severely mentally disabled, if they survive past infancy. But some, miraculously, do. Because the mind of a baby is remarkably plastic, and sometimes it is possible for one of these children's brains to have another part actually "take over" the responsibility of breathing. And when that happens, these children may be able to learn or develop, though always disabled.

You may already know this story, you may have heard about it. It just so happens that both little babies were in the same hospital. And the doctors told the parents of the baby with Joubert's Syndrome about the baby that needed a heart. And they all decided that the best thing to do was turn off the ventilator when the baby went to sleep (because that is when she needed it) and when she passed away they would have things all prepped to give the other little baby her heart. A huge wrench was thrown into the plans, though, when the little girl with Joubert's did not stop breathing. She just went to sleep and kept on breathing all on her own.

Now, I am NOT going to say that those doctors were evil human beings or criticize the parents in any way. But I do have to say that it really chilled me, every time I thought about it. Especially because I got the sense that the doctors were not pleasantly surprised that the little girl had managed this amazing feat of breathing on her own! But rather that they were disappointed that a perfectly good heart had slipped their hands...

Of course, I wanted that little baby, that perfect little girl with a bad heart, to get a new heart. I can't blame them for feeling the same way. What strikes me as so wrong is that they felt that since the chances were so great that the other little girl wouldn't live, it was ok to take from her what few days she might have left, to give them to another child.

And I just couldn't help but feel that the fact that she was severely mental disabled played a part in that. I mean, I have NEVER heard of a doctor telling the mother of a child diagnosed with a brain tumour that chances were not good for their child. So wouldn't it be better, rather than trying to treat this tumour against the odds, to let the child die so that the organs could be given to other children.

But then again, maybe that isn't as crazy as it sounds to me, after all. Because the second thing I have to share is about the doctor who first spoke to my dad when he came in with his leukemia. And this doctor was strongly in favour of my dad signing the papers for palliative care.

Of course, the odds were not in my dad's favor. They still are not, though they are better now that he has responded so well to treatment. So the doctor told my dad that he might not want to go through the harshness of chemo, but instead just get pain meds and let himself die. And when my mom and dad discussed with us as a family and came back to him to say that we had decided to try treatment, he too seemed disappointed! In fact, he told my parents "we'll see what the tests say. I might still decide not to treat you."

I just want to tell you that my dad is NOT afraid to die. I know this well. I know that when he decided to go for treatment, he didn't do it because he was afraid of death. He did it because he saw our faces. He thought of the unpaid mortgage on the house, of my mom trying to make it on her own, of how sad it would make his children, and how his grandchildren needed a grandpa, especially Joel.

I am afraid that doctor was just looking at the statistics. I am afraid that he just didn't feel, in light of the odds, that it was "worth it" to "waste" time and effort treating someone who only had a 50% chance of responding to the first round of chemo, and only a 15 to 30% chance of making it past 5 years. Just like those well meaning doctors that looked at that little baby with Joubert's thought that her few remaining days, or slight chance at a disabled life could not be worth that of a "perfect" baby who just needed a heart...

And that makes me sad, and a little worried too. After all, the days are not that far back where parents of PBD children were told to "just take them home and love them, because they will die within a year." Maybe I would have been the parent the doctors came to in order to ask if instead of a feeding tube, we let Joel pass on so that they could have his heart and kidneys...

Doctors can be well meaning, like when they are trying to help a baby with a bad heart, or they can be, well, a bit heartless, like when they tell a cancer patient they might refuse to treat them, but in any case, they are only human. They can not always tell when a patient can live or not. They make mistakes. And maybe, sometimes, they do not value life in the way they should, because maybe they are only thinking in terms of statistics, and the material world we see and touch. Maybe sometimes they think in terms of finacial responsibility and what people can "achieve" with their lives.

Maybe they can not see the eternal, or understand the true value of life. They do not think in terms of the soul or spirit.

Maybe it is our job to remind them, or maybe even ourselves. Maybe the way we judge our own civilization should not be by whether we could make it to the moon, or vote for our leaders, or write masses of books, or have leisure time, or win Olympic medals, or create new technology, or make scientific discoveries, or produce vast varieties of music. Maybe it is not about the quality of life the fortunate ones can lead, with two cars, computers, the arts, and large, spacious homes. The Romans did many of these things too.

Maybe we should judge ourselves by the love and care we give, or withhold from, the weakest among us.

Even if my father does not "beat the odds" by making it past 5 years, every single day he has had since his diagnosis not quite a year ago has been pure gold. His life was worth it to me. If I had a billion dollars, I would have given it for his life.

I am so glad, when my little baby was suffering, and we were struggling, and my heart was starting out in its journey of breaking, that God did not take my father from me. Thank you God, for giving me back my dad.

Maslow's Hierachy, or an Affirmation of Life

Quite a while back, I had a special and important friend ask me if I really thought that any life, no matter how limited, or pain filled, or difficult, was worth, well - life.

And that really set me to thinking about life and why it may be or not be valuable. In other words, what makes existing "worth it."

First of all, to my friend, in case you are reading this: please take no offense that I have put your question (paraphrased a bit) in here. Also, let me say to everyone that I myself struggle every time I have to see Joel suffer. I have, at times, almost wished he would pass away so that the suffering could end, and I can't help but feel that it is only the "good times" that make it all worth it.

So, I hope you will understand these musings in that light. My thoughts are, again, not meant to criticise anyone who has made any hard decisions about turning off ventilators or administering CPR or anything like that. There may be times we might need to let go, so please do not think I would ever look down on anyone for those tough decisions. Hey, I've been there myself, and I will be again, and I understand about the agony in the heart about it all.

This is meant to be an encouragement, as my musings brought me encouragement, even knowing that those evil days of hard decisions loom up. I just wanted to explain clearly why I think that Joel's life is worth it. Why I am glad that he existed.

Another long introduction, so let me get down to it all.

Maslow, a psychologist, came up with something called "Maslow's Hierarchy" which I studied when I was training to become a teacher. He made a "pyramid" of needs, putting the most important on the bottom and working his way up. My apologies to Maslow, as I am probably oversimplifying the explanation, due to the limitations of my blog.

My point is that I disagree with his order of needs. Of course, from the point of view of what is necessary to actually sustain life in an immediate sense, he was right. Food and water and all those things come before the relationships that he was also affirming were needs. Love, intimacy and friendship, etc.

Still, it seems to me that it is a bit "upside down." After all, without the love and intimacy and friendship, would we really want to live anymore? I mean, I think if I had to choose between slow starvation with my loved ones present, or living completely alone for the rest of my life with mountains of food... well, I am pretty sure what I would choose. I'm not saying pain can't beat you down completely and make you do crazy stuff, I have been in labour, and I know why torture is so effective. I'm just saying that there have been many examples of people who gave their lives for those they loved, which makes me think that for some of us, at least, we recognize that what truly gives value to the lives we have, is the love we give and receive.

Which is what I wanted to talk about in regards to Joel. I was thinking very hard about it all, wondering if I could truly say that Joel's life had been "worth it." Both for him, and for me.

And it all depends, really, on what you think life is all about. If you think that it is very important to "experience" things, then no. If you think that one of the top goals of life is to be comfortable and enjoy the "good things" of life, like mashed potatoes and gravy, fine paintings, days at the spa, scuba diving, movies with popcorn, driving in a car with the top down, making love, etc, etc, etc, then a big resounding "NO." I mean, Joel can't do any of that, so yeah, his life would seem pretty, well, useless to him if you think that sort of stuff really important.

Or to those who would say that your life is worth something only if you can contribute to society. Meaning financially and practically. By doing something for society, like a doctor, or teacher, or even a garbage collector.

But I can't agree with that. I can't agree to it at all.

I would have to say, to quote a book that I can no longer remember the title of, that "personal relationships are the real life." (No, this book was not some self help book. It was a novel, and I think it was by the same author as Howard's End, but I am no longer sure...)

What I mean to say is that what I believe makes life worth being alive for is simply this: Being able to love, and being loved by others. Joel's life has meaning and value for two reasons. The first one is that he can love me, and his daddy, and his brother, and etc. He gives us love. And we accepted it with gladness. It makes our hearts sing.

And also, he is someone for us to love. He is important, it was important that he should exist, for us to love him. I don't know how else to explain what I mean, other than to say that by loving Joel, my life has been enriched. It has been given new and beautiful meanings. I am a better person, even a more fulfilled person, and in ways that only Joel's existence could bring about.

And I know one day, if you meet him in heaven, and ask him if it was worth it, all the suffering and pain he went through, he will say a resounding "YES." He will say it was worth it all because he loves his mommy and daddy and because of that love he would do it all again.

Now you likely think that I have left God out of this, for this one time. Surely you don't know me well if you think that for one moment.

If you are at all familiar with Christianity, you have heard this: "man's chief end is to glorify God." I'm not going to take it upon myself to exactly disagree with that... but sometimes it seems to me to be a bit "upside down." Like Maslow's Hierarchy. For the first and greatest commandment is to "love the Lord your God with all your heart, with all your soul, and with all your might."

If you read the New Testament, you will find words about loving God and loving others all over it. Like a forest in the fall, covered everywhere in leaves above and below, you can not get away from it. Love God. Love each other.

Joel's life has value because I love him. He is important to his mom, and his love is important to her. There is a value here, but it depends on me. On my whims, or my existence.

So let me assure you that I am sure that life has a greater value than what other people put on it, on whether you find you are greatly loved, or greatly neglected or forgotten. If Joel's mom was incapable of love, or unwilling to face the pain and abandoned him, it would not negate the importance of his life.

Joel's life, and my life, and your life, all are important to God. No matter how anyone else looks at your human life, whether they find you lovely and useful, or whether they feel your existence is a waste, or not worth the expense, or pain, or whatever it might be. Your existence still has value to God. Just like Joel's.

I'm going to repeat myself here several times, something my husband would point out to me as beating a dead horse. I can't help it, I just can't say it enough.

God waits to be our Father. He waits to hold us in His arms, and comfort us. He values us, and we are valuable because God loves us, and our love is important to Him. This is what gives our lives a supreme kind of importance. Our value is immutable, because God is immutable. God wants us to exist, because He loves us, and wants us to love Him back.

So I know that despite all the pain, all the suffering, all the deep hurts and crying both for Joel and for me, I am glad that he existed. His life is a gift to me. His existence, even through all that he has lost, and all that he must suffer, is a beautiful gift to me. I am grateful to God for Joel And I am glad to know that Joel's life is so valuable and beautiful to God. It does not depend on what Joel will experience or accomplish. Joel is loved.

Letting go... Part Two

Part one of this was very sad.

It is very sad, the saddest thing in the world, when a loved one moves beyond our sphere of reach...

If you don't want to hear another blog all about God, just read part one and skip this one. If you don't read this, you'll be stuck in my sad place, but I am going to warn you that the rest of this is all about "God stuff."

There is something I want to say about my feelings that I can't let go. That it is never enough. I will never get enough time to love Joel, to hug him, to kiss him, comfort him, cuddle him. There will never be enough smiles or laughs or holding my finger in his tiny hand..

Though this causes me pain, it also bring me hope.

If you drop a brick on your toe, it will hurt like the dickens. But you will never be more sure, more aware, that you are in possession of a foot.

If you lose a loved one, it will hurt more than any other emotional pain, but it seems to me evidence that you possess a "limb." No, not a "heart", though, yes, it is evidence that love is possible for you.

It is the evidence of that part of us which is eternal that I speak of. Your soul.

You see, some people talk about things like "the circle of life." The idea that we are given our "share" of life which is the maybe 70 or 80 years of life we have, and then it is our turn to pass on and let other life have a turn. There is that school of thought which says that we are "just" the animal life which we can touch and see with our physical senses. And everything else is just this force called Nature's way of keeping our species going. Therefore the love we feel for our children is just our maternal (or paternal) instinct. And when we die, we are gone forever, so we must take all our comfort in "living on in the memories and hearts of our loved ones."

When I think of this whole idea, I am at a loss to express myself. I find myself resorting to old fashioned expressions like "poppycock!", or "balderdash!" That is all I am going to say, for fear of offending someone who reads this and really believes that. I'm not trying to criticise, I just want to encourage.

So let me say that I am very sure that my feelings for Joel and about him are not explained by mere evolutionary ideas. I have seen mother cats fight with their lives to defend their kittens, and I am sure that they have a strong "maternal instinct." I have seen those same mother cats after they lose those kittens, though, and I can tell you that they will quickly move on and mate and bear new kittens. That is ok, for cats. It makes sense, and is obviously the best for the species.

Now let me say, that I am in no way disparaging animals. I like them very much and have a healthy respect for them. But they are not people.

I have seen human mothers who will never "forget" their children. Their love for a lost child will continue on and on, year after year undiminished. People who have spend a lifetime with their mate, and they will tell you it was not enough. Not enough.

I feel this cry in my whole being. It can never be enough of life and of love.

Yes, it can be enough of war, and pain, of poverty or arguments. Certainly it can be enough of injuries and illness and hate and worry.

But I can tell you, having lived over 14,196 days, I have seen quite a few sunrises and sunsets, and I am not tired of them. No matter how many combinations and ways, colour is wonderful! I'll never hear enough music! I will laugh while sharing a joke hundreds of times, but it will never be too often. There never will be enough time for all the love to be shared. My soul cries out with great thirst for beauty, truth, love.

If I thought that Joel's life ended when his body dies, and that my life in turn would end the same way one day, this would not only fill me with sadness, but with despair! Ashes to ashes and dust to dust!

But when I contemplate this great thirst in me for these intangible elements, it reminds me that I am more than just an animal body. How could this thirst for beauty, truth and love ever evolve? The reason that it seems so wrong to me, to let go of Joel, is because my soul senses the eternal. I know that the reason our love can live on for years after a loved one is gone, is because it was meant to do so.

I will one day have to let go of Joel. I will have to let the part of him that is immaterial and permanent pass into another sphere of existence and I will be left holding an empty husk. But this is only a pause for me. This music will change into section "B" of the score, but then finally, one day, I will hear section "A" revised.

The Bible gives few details about what it will be like, in our final state. It does promise us, if we know Jesus, we will have a physical body like his. And I know this: The God who made giraffes and platypuses, green and blue, thunder and lightening, lemons and cherries, will in no way be able to disappoint us. And I will get to see Joel again, and never let him, or any other loved one go. As God Himself will hold me, and so shall I ever be with the Lord.

Letting go...Part One

It's me! Steve still hasn't gotten a chance to sit down and put his thoughts on the "paper." And I am, once again, overflowing with thoughts, so I couldn't wait for him any longer.

It was a sad week for the online support group. Two of our little ones passed away...

It made me think "No mother is an island. The death of any child diminishes me..."

A thought or two has also been bouncing around in my mind, about when the time comes to let Joel "go."

I have heard it said that "when the time comes, you will know it." Maybe some people have this revelation, this knowledge, or feeling that the time has come to loosen their grip...

It seems more to me, that this feeling it is "the time to let go" has to do with one thing only: seeing our loved one suffer. I have never heard anyone say it when their loved one was happy and healthy, when the good times were all fresh.

And I am sure that is how it will be for me. When Joel is healthy and happy and there are good times, I will always be hoping for more. It will never be enough, I will never feel this time is "finished" until it is finished for me, either by Joel's sudden death, or by his prolonged illness.

I recently got the logistics in place, in the case of Joel suddenly passing away, that we do not need to call anyone in, but the funeral home, when we are ready to let Joel's body go. I just didn't want the stress of it all suddenly thrust upon, during the time when I just wanted to hold Joel one last time. I wanted to be able to sit quietly with him until I was ready, and not have my home filled with medics, or medical examiners, or whatever, in our sacred hour. I don't imagine that will be how it happens, usually these PBD kids give some warning that their little bodies are failing, but just in case, I no longer have to worry about it.

With that, the palliative care nurse is sending us a paper with DNR possibilities to consider/check off.

It is a nice thought, to think that I might somehow "know" when to say no to a ventilator, or CPR, or whatever. But I doubt very much that is how it will go.

Because it will never be enough for me. Because I will always hope and long for just another good time. Just another day of smiles or cuddles. How can I know which time is THE time?? Lots of children are on a respirator for just awhile, and then they have more life, more happiness left in them.

I am afraid that my only way to know that Joel will not get better "this time" is when he does not get better... I am afraid, for most of us, it is only by seeing our precious loved one suffer that we are finally able to say "I'll let them go, only end their suffering...." I wish very much that it was not like that. But I am afraid that God will not send me a letter telling me the date that Joel will no longer be able to get better anymore. So I pray, that even though I very much want my chance to say a final "goodbye", God might take Joel without him needing to suffer...