Thirst

On Monday night, while I was talking with my friends, something we discussed really struck me. It wasn't an entirely new thought in some ways. But it hit me in a strong, new way. I was surprised by my emotional reaction to it.

We were talking about if a parent ever really "got over" the death of their child. We were discussing the ways that they might heal, but that the pain never completely went away. That the child remained in memory and in heart forever. And not only when it comes to a child. The loss of a spouse can be the same way. Or a sibling. A part of us, forever missing.

And while we were talking about this, it hit me. I realized how wonderful this was!

Before, when I thought about this, it made me immensely sad. Sad and afraid. The thought that I might never recover from losing Joel. The thought that there would forever be a space located just under my rib cage where my breathe would cut when I thought of him. That years later I would still long for him. What kind of person would I be? What kind of life could I live, with this pain a part of me forever.

I haven't laid those questions to rest. Sure, I know that as I say "yes" to God through this all, even my pain can be transformed so that my life can be a beautiful thing. But that isn't what struck me on Monday night.

What struck me was how wonderful it was that I would always love Joel and that I would never forget him and that I would long for him for all my days on earth. For this longing, I know, will one day be FILLED.

Perhaps for the first time I can understand Jesus' words "Blessed are they that mourn, for they shall be comforted." That always sort of confused me. Because I wasn't thinking of full comfort. I was thinking of temporary half measures. Then I realized that when it says "comforted" it doesn't mean as in someone will put their arm around your shoulder while you weep. When it says "comforted" it means that the mourning is ENDED. Comfort is found, of a nature that is full and complete.

And receiving this sort of comfort makes all the mourning worth it.

For I shall mourn Joel. It is likely that I may mourn him for a long, long time. But not forever. And NOT because I forget him. No, it is much more wonderful than that. Because one day he's going to be part of the welcoming committee for me when I finish my own life on earth. And that reunion is going to be very much like when you are really, really thirsty for a long time, and then you finally get a drink.

In fact, sometimes it is worth it, to get super thirsty, just to experience how wonderful water really is. And you would never really know if you never really got thirsty. It is the thirst that makes the satisfaction so complete.

God gave us immortal souls. Because we will last forever, we also can love forever. And the fact that I will never forget Joel, that I will never stop longing for him, is evidence that LOVE NEVER FAILS. And that is amazing. What a great gift God gave us. We can live forever, and we are able to love forever too.

When I mourn, it is evidence of this gift. I can love someone forever. And one day that terrible "thirst" which we call mourning shall be satisfied. I shall be comforted, and I will once again be able to see and talk to and hug my loved one.

I'd never trade all the sad, lonely, painful years for then I'd miss that final reunion. I'll wait through the hard years so that one day I can have the joy of that ache being quenched.

I'm not downplaying how amazing it will be to finally see Jesus, or be able to really commune with God "face to face." Some people might feel that I'm straying close to forgetting that God is supposed to be the most wonderful thing about heaven. I'm not.

But Paul says in 1st Thessalonians that we are not to sorrow like those who have no hope. Why? Because our loved ones will meet us one day when we go to be with Jesus. He's not saying that we should not sorrow at all. And he's not saying that we should not sorrow because we get to be with God day. He is specifically saying that our sorrow over those that die should have a different sort of "flavour" to it. It should be seasoned by hope, because we get to see our loved ones again.

So I can face the long years with out Joel with a sorrow that is seasoned by my hope. A terrible thirst, that I know will end one day with total satisfaction. It will be quenched.

I say "Blessed are they that mourn, for they shall be comforted."

Birthday Blues: Part Two

I made it through Joel's B-day ok. I was cranky. I was tired. I was emotional and on the verge of tears all day. If I didn't have a family to be responsible for, I sure would have crawled under the covers with a good book and a couple of bags of potato chips. It seemed like the day took forever, but I made it through.

I'm just being honest here. I'd love to say I had a great attitude. I'd love to say that I was so happy and grateful that Joel is still with us that it overshadowed all my pain. I refuse to lie though. Most of the day I felt crappy.

It might partly have been my fault, I don't know. Maybe if I could have changed my attitude, I'd have had a better day. Some days are like that, as Alexander has said, even in Australia. (It's a favorite book, a children's book, and everyone should have a mandatory copy even if they don't have children)

I did have a great evening, though. A few friends came over. I kept it really small on purpose, due to the fact I suspected I might be feeling antisocial, tired, grouchy, and emotional. (which as I mentioned, I was) And the friends that came helped to redeem what was a difficult day.

I'm an extrovert. So sometimes just being with some great people really makes me feel better. We just chatted and laughed. We got a bit serious too. Mostly I just felt at ease with them. I felt they understood that Joel's b-day could be a difficult day for me, even when we had a lot to celebrate and they were ok with that. It was a little party just for me, and I am thankful to them for that. They took me out of myself and made me laugh, have fun, and even let me get a little weepy too.

And the next day was better, again. I felt a lot more thankful, the next day. Funny how that is, eh? Monday I was so sad about what the last two years had taken from me. Tuesday I was just being happy and thankful to have a happy little boy who loves his family.

I hope no one ever holds days like Monday against me. All day long I really was saying to myself "snap out of it and grow up grumpy pants." To no avail. Every now and then a voice inside my head (no, not God's voice this time, my friend, this time it was my voice. Maybe if I'd shut up from berating myself for a minute to actually listen to HIM I would have been snapped out of it all) said "man, I am embarrassed here at your behavior! What is up with this self-pity, and after you claim that God helps you through, here you are snivelling over a B-DAY!" Yeah, I was mentally embarrassed by myself, along with being grouchy, sad, upset. Add embarrassed by my own behavior.

Good thing is I have a God who understands and forgives me, and let's me have a "do over" the next day. And I have friends who come over to support me. And for the record, I did NOT have to wear railroad train pajamas, or eat lima beans for supper. There is still a lot to be grateful for, even if you are not in Australia.

Proof of Life

I haven't written much about God in my last few posts. Just saving up?? There are a few different "mind" blogs I've got about Him. So it's probably about time I started getting them out. The question is always where to start. Some times I even "write" a whole blog, start to finish, in my head while I'm weeding the garden or whatever. Then I sit down here and ????? I got nothing. Only to go out the next day for more weeding and - VIOLA! There it is again!


So I've got some things to say and I really want to say them. We'll see if I can ever frame those thoughts into a blog. Maybe I should take a laptop out into the garden with me??

Here are some thoughts I've been having lately, due to two different friends. One of these friends is studying to get a degree that I can never remember the exact name of. It's Philosophical Theology, or Theological Philosophy or something like that. Maybe. Sorry, Matthew!

Anyway, he was over last week and told us a bit about his thesis. He's writing about testimonial knowledge, related to theology and the Middle Ages. Ok, I'm not super great with the details, but I got the main idea. We had a little discussion about how much of an individuals knowledge is testimonial knowledge. It's a lot more than you might think!


Testimonial knowledge is simply the things you believe are true based on what someone else has told you. Not just the "testimonials" you find on advertisements.

For example, you may believe that magnets have a "positive" and "negative" end, and that two positives or negatives will repel, but a positive and negative together will attract. This is likely something you have experimented with for yourself. If you have played magnets at all, then THIS knowledge is NOT testimonial. But if you believe that the REASON for this attraction and repulsion is the electrical charge of the atoms that make up the magnet, you have now entered the realm of testimonial knowledge (unless you are a physicist, I suppose.) For you are accepting the knowledge of experts that things like molecules and atoms exist. And that atoms are made up of electrons going around a nucleus. Etc, etc.

Sure, these experts seem to be trustworthy and know what they are talking about. We are not debating this. But your knowledge is still testimonial. Which means it is only as good as the person who is giving it to you. And that is the crux of the matter.

So when I read the cover of the National Enquirer, I put that sort of testimonial information in the "fiction" category. And when the doctor tells me I have an infection and need an antibiotic, I treat this testimonial information a lot differently! Both things are entirely testimonial. I have no actual proof in my hand that shows me my elevated white blood count. I have the word of my doctor, whom I trust. Unlike the first hand "witnesses" put forth by the National Enquirer.

A lot of our "knowledge" is like this. We keep it or forget it, based on the quality of the "expert" or witness involved. We often can not evaluate the information our self. So we must evaluate our source of information.

Ok, are you with me so far? Now we are getting to the heart of the matter. The first friend made me ponder over the things I knew and why I knew them. My second friend did something else.

This friend asked me some good questions. Not just good questions, like many good questions they were also hard to answer. And in light of my prior conversation, I really was thinking about it all.

For this friend asked me some good questions about how I know that God is speaking to me, when I say that "God told me" something. She was asking me how I knew that it wasn't just my own thoughts? Or did I actually "hear" something?? (read: was I nuts???? ha ha ha) Good questions.

Really, they were questions trying to ascertain what sort of testimonial witness I was. Was I an expert that could be trusted? Was I sincere but misguided? Was I bonkers? What was the deal with all this God stuff and could anything I said about my relationship be trustworthy knowledge or should it be filed in the "National Enquirer Category?" She was asking me for "proof of life." I said I "had" God. Could she get some proof?

And I realized that I could not really give any answers to her that could be ultimately satisfying. Sure, I could tell her about my experiences with God. But in the end it would come down to this alone: What sort of "expert" (I use the term loosely here!!) was I?

Am I the sort of person who is honest? Is my sincerity believable? Do I make a lot of "intellectual" mistakes? Am I gullible myself? Do I usually live in a state of denial of facts? Am I predisposed to believe what I want even when there is no evidence?

Is there any evidence that what I claim is true? I mean, I say that God gives me strength. I say that God is why I can get through. I say that God has changed my life. Is there any evidence for this? Is my life any different? For the "proof of life," the proof of God's life in me, is just..... me. Is my life good proof?

That is a scary question. I sure can't answer it, as I wouldn't be unbiased, would I? That is one that she's got to answer for herself, just like you do. And if you come to the conclusion I'm nuts, please, keep it to yourself! Based only on my track record, I don't wonder that you, (or she) might want to investigate my claims. I'm hardly perfect. I'm human too, and humans can make mistakes. Even scientists (like with the Piltdown Man).

But there is another option here, thankfully. When it comes to electrons and neutrons, you'd have to study many years and do a whole lot of experimentation to try and figure out if the theory might be true. You'd have to become an "expert" in this field yourself. And quite frankly, with the reliable sources you've got, your not going to waste your time doing that, when you've got a life to live. You've seen enough of the effects of electromagnets to believe the theory behind them.

When it comes to God, though, it's a bit different. I'd like to think that my life, like the magnets you have come in contact with, shows evidence of the theory at work here. But if not, you really don't need much to try and figure out a bit of it yourself. All you need is a bit of quiet time, say maybe 5 hours (and they don't have to be all together, you can break em up), and a Bible. You can investigate my claims a bit yourself.

It's easy. Go somewhere quiet so you don't feel "silly" talking to God. Tell Him your are sincerely wondering about what I have said and you are trying to check it out. Ask Him to speak to you if it is true. And then pick one of the gospels. Matthew, Mark, Luke or John. John is my favorite, and Luke next. But any of them would do. Just sit and read one of the accounts about Jesus. And ask God to tell you if it is true. It is sort of your own "experiment". You never know what might happen. And I can almost guarantee that you will actually enjoy reading about Jesus. He really is pretty fascinating, no matter what you believe about Him.

And maybe, just maybe you'll hear God's voice for yourself. That would be the real "proof of life." And if my testimonial knowledge is at all trustworthy, God is pretty fantastically amazing! It just might be worth it. :)

Birthday Blues

Last night I had a little cry. It wasn't exactly Joel's upcoming birthday that did it, it is just the thoughts and feelings that his birthday brings out.

So last night I was thinking about Joel's birth, and about those first months when we thought he was a "normal" healthy child. I was remembering how I tried to put him in our Jolly Jumper at just over 3 months, like his brother, Caeden. His head was still a bit wobbly, but he seemed close to holding it up ok. I was remembering that I was thinking at the time "Hmm. It's pretty young for the Jolly Jumper, and he's not going to be exactly like his brother, so we'll just try again in a few weeks. He's almost there."

This memory dissolved me into tears. It is very painful to think of the time when I thought Joel's body was "perfect." And remembering how he was almost holding his head up, and how now he could never do what he did then, well, that is pretty hard too.

Birthdays. Yes, it is a time for celebration, for Joel has hit two years and he is still a happy little guy. Each happy day is really a cause for celebration, because each one could be the last one. I don't take that for granted.

But Joel's birthday really leaves me with pretty ambiguous feelings. And many of them are not that great.

I could go all out. Put up the streamers, get the little cartoon plates, invite "friends" for him. I'm not knocking this route. It's probably a good one.

I just can't do it myself. It feels too much like pretending. I mean, I know that Joel could really care less about all that. He's happy to get some birthday cake and ice cream to taste. And to get his usually cuddles and loving. That is all he really needs or wants.

And presents are hard. Last year I convinced Steve to spend $80 dollars on this fancy floor mat that played really nice music with light up flowers and dangly toys. I don't regret the purchase, and Joel has used it. But not like I'd hoped. He's gotten about $10 dollars of value out of it. Maybe he'll start to enjoy it or play with it again, I never know.

But when, two weeks after we gave it to him, he was just no longer interested in playing, it was so sad. He wasn't interested in playing for several months, in fact. So now when I look at the play mat, I have mixed feelings about it. I don't enjoy trying to buy Joel toys anymore. Too dangerous. Too many fragile hopes that are dashed. And he just doesn't seem very interested.

So Joel gets clothes for gifts. Which makes me feel sad too. Presents for Joel are not too much fun for me.

And birthdays are such a remembering time. I think over the last year. I think about the future. Mostly they make me remember Joel's day of birth and all the happy feelings that went with it. Joel's birthday is just hard.

Or, at least, the days leading up to his birthday are hard. By the time I get to his birthday, I might be "done" remembering. Last year the day itself was not as bad as the lead up to it.

So on Joel's birthday I have created a tradition. Joel gets a cake. And I get a cake too. A cheesecake. One for him. One for me. Just a little something to help me feel a bit better about such an ambiguous day. Funny, isn't it? At my age, it should be MY birthday that raises ambiguous feelings, not my two year olds.

So if you come by on Monday, you'll get a choice. Regular cake or cheesecake. But not TOO much of the cheesecake. Leave LOTS for me!

Green-Eyed Monster

Want to know something "funny?" I'm not really envious of people who have healthy children anymore. I'm still sometimes envious of people who can have babies easily and (relatively) stress-free. But I'm not really ever green-eyed when I'm holding Joel and looking as someone's healthy child.

For sure that is partly thanks to Caeden. He's done a lot that way. But there is another component here: People with totally healthy children are now beyond my ken.

It's other parents with healthier PBD kids that I now envy. Does that sound messed up? It actually sort of makes sense I guess, in a messed up sort of way.

You see, most of us are envious of people who are doing a little better than we are. Most of us are not envious of Bill Gates. We don't turn green at the house that Brad and Angelina J. own. We don't crave after the clothes worn on the "red carpet" or the expensive parties Brittany Spears threw.

Too out of reach, no? I mean, we don't envy people who are beyond our sphere of existence. That's FANTASY for us, not ENVY.

We envy the neighbour who buys a new car. The co-worker who got the promotion instead of us. The parent whose child always makes honour role while ours squeaks by with C's.

We envy people who get things that are just out of our grasp, not people who are miles beyond us, no?

We get green over the possibilities that never happened to us. "Why not me?" we ask. It could have been me. I'm in the same circle, I'm on the same level. It was POSSIBLE, but it never happened. So we envy.

And parents will totally healthy children are beyond my envy now (exception of pregnancy). Now I am envious of people who tell me that their PBD child has learned to sit up. Man, it could have been Joel. He was so close! Or the child who wears glasses. Or who can crawl. Those sorts of things.

Hey, I don't mean that I resent them!! I sure don't. I'm glad for them, and I wouldn't ever take it away no matter what. But they are the "almosts" for me. Things that are almost in my grasp, but I don't have. The realm of possibility for me. So I wish that I "had" what they "got" too. It seems like something we could achieve. So close, yet so far away.

I don't like to admit this. And don't think for a minute that I'm CONSUMED by this envy. I'm not. It is brief and fleeting, and I try not to ever dwell on it. It does seem really stupid to envy people who are also losing their children. Hello??!!!?? What is wrong with this pic? Can't I find really fortunate people who don't have sick, disabled, dying children to envy?

No. I can't. They are beyond my sphere now.

And maybe somewhere out there, there is another mother who is wishing she was me. Because my boy is still alive, and her child has already passed away. Pretty crazy too, if that is true. But if it is true, then I'd like to say that I understand you, whoever you are. I understand. You are envious of me, because I'm in your sphere, on your level of possibility. I get it. I don't "mind." I'm just sad that you are here, with me.

How Many Words for Snow?

Did you know that the idea that Inuit people have a large number of different words for snow is an urban legend? (If you don't believe me, check it out. You'll find a number of different articles explaining why, though I only read one myself.) Apparently they have about the same number of words we do. (the legend sprung from the different way their language works.)

I have always loved that urban myth. And now it is shattered. But truth at all costs, right? It just seemed so beautiful to me, like maybe the Inuit could name every single snowflake as it fell from the sky. I pictured a snowy, glistening landscape with my Inuit guide teaching me to see all the subtle nuances around me. Sounds nice, even if it's not true.

Which brings me to this blog. I'm not really sure how many words there are for grief, or even if I could ever, like my imaginary Inuit guide, teach you all the subtle nuances of the landscape here in grief-land.

What I am sure of is that in real life (very different from fantasy, no?) there are two things that could become very tiresome after awhile. One would be learning 100 different types of snow, with the appropriate words, and the other would be learning 100 different ways someone grieves, with all the appropriate descriptions of the pain.

Which sometimes leaves me puzzling as I write my blog. What do I write about when there isn't much going on to write about? Endless descriptions of my various moods and emotions of pain, anger, disappointment, etc, well, that sounds pretty tiresome, even to me. So what can I decide is appropriate material for this blog in the brief calm & sunny periods we have?

I think I will just award myself artistic license here, and I hope it won't be too disconcerting if sometimes I do write something slightly off the topic of Joel. It will be fun for me, though not necessarily of interest to you. I'll do what I can. Only other option is for you to read realms of homespun poems on the various faces of grief. Consider yourself lucky at the alternative!

So, for now Joel continues to seem fairly stable and he is very happy. He's been eating again, only with more enthusiasm and larger amounts than ever before. Through the course of one day, he polished off a small jar of blueberry "dessert." Yup. I feed him all the overly sugared dessert-y time baby food that you are normally supposed to avoid.

Because that is what he enjoys, and right now feeding orally is mostly for enjoyment. Because he's never going to live to get Type II diabetes anyway. Because he's also never going to get to enjoy a B-B-Q steak, sushi, lobster, etc, so I figure he sort of deserves to be lean on the veggies and heavy on the dessert. Though I do give him small spoons of a bit of veggies or chicken, just to try and develop a taste for it, and he tolerates this, in the hopes of a special treat of ice cream. So I'm not completely negligent. We just make a lot of exceptions to the rules, since we have the perfect excuse. Whose going to argue with "he's dying?"

I was hesitant to even tell anyone about Joel starting to eat again. Reason being that he's started to do so many things and then lost them. It's too disheartening to have to tell people, when they ask, that he doesn't do it anymore. Like when he would say "Ma" to me. Then he stopped. Well, he still has times were he sort of does it, infrequently. But not like before. Eating has always been really off and on for him, it's something I know might not last very long this time either. I just hate the thought of being asked "How's the feeding going?" only to have to tell people that Joel doesn't do it anymore. So if you actually get to see me in real life, can you maybe try to remember not to ask? And I will try and tell you myself, if there is any "good" news about it.

For now, though, it is going great. He seems to be really enjoying it (which is the one and only reason I bother to do it). He even seems, at times, to be "asking" for food. Smacking his lips and sticking out his tongue, with lots of "sweet talk" mixed in there. No crying or fussing when I give him the food. And so far he is swallowing it without any difficulty. No aspiration pneumonia. :)

It is such a crazy disease. He's swallowing baby food no problem. Even melted ice cream. But his epiglottis is still falling back when he breathes. I can hear it so clearly when he is awake and sitting in my arms. It truly sounds a bit frightening, if you are not used to it. Clear obstruction. And no difficulty swallowing food. A mystery to me.

So, if things go well for a short stretch, there might be times where I just write about something on my mind, even if it's not directly about Joel. Maybe you might even be "forced" to read some of my not-so-talented poetry, if I feel like inflicting you with it. And then again, at any time, there might be lots of material generated by crazy Joel related stuff, turning things upside down with out warning. Well, consider this your warning! And be thankful that I really couldn't find a hundred words for snow. Or grief.

In the Majority

Before I change the topic completely, I just have to write a short bit about my last blog. I don't think I have achieved closure on it yet! So, thanks to my two commentators who were not afraid to be as honest as I was in my last blog. I appreciated it. There were only two of you, so either the three of us are just a bit strange, or perhaps more likely, we were the only ones brave enough to admit to it. Yeah, it's not something I've ever mentioned (unless I was talking to someone really grieving) for the very reason of the strange looks I might get.

Case in point: After I wrote my last blog, my husband was worried enough to have a little conversation with me about if I was sure I was alright, and etc. Yup. Even my HUSBAND. At least he didn't have me committed. So I sure hope that the rest of my readers are not out there in cyber land wondering about me, and maybe some of them are glad I don't have their address, while my friends are thinking about changing theirs.

Well, let me say it again: I'm pretty sure it is somewhat normal, though obviously not mandatory to grief. Last time it happened, these strange thoughts slowly tapered off as I worked through it all. Though I would like to say specially to you Kd, that yes, I think they can happen occasionally to people who are not in grief. Maybe it's more the stress of a change in circumstance. I think that they do happen to me in the "good" times as well, they are just really rare, as opposed to occurring more frequently in the really difficult & traumatic times.

So, yes, my friend, I KNOW you would not hurt your child, either. I totally get it about these thoughts, having had them myself. And again, thanks for not leaving me hanging. For the rest of you, I hope you know I'm really not a homicidal maniac. Though I am obviously a maniac, I am fairly harmless.

Now, where to go from here?

I had a really wonderful day yesterday. Steve and I took the two boys out to a friend's house. There were several families there, all from our church. It was a perfect day. Not too hot. Not too cold. Not too many bugs. And lots of friends, kids running around laughing or sulking as the mood struck. ;)

And Joel had a wonderful day. He was so happy and playful.

It felt great. It felt "normal." We were just a family, together with other families. Just being together and enjoying each other's company. One of the greatest joys there is here on earth.

And it all made me think, once again, of how very blessed I am. Sure, it would be easy to be bitter, or to complain about the "rough" deal we have. I'm not going to say that being thankful is always easy. And looking at the terrible loss we face, I know that self-pity will be an enemy.

Truth is, one of the reasons it would be so easy to feel short-changed IS because I have it so good. And so do all of you around me. Yes. You do. I'm not saying that lightly, but let's be real.

Cause if we stopped just looking at N.A. and other developed countries, and really looked around, it would truly all look different.

So, surrounded by friends with happy, healthy babies and children, the products of good nutrition and excellent medical care, yeah, it would appear that things are pretty crappy for me. There it really looks like I'm in the unfortunate minority.

I'm not. The world is full of mothers who have lost children. Lots of them in N.A. too. But even more in the world abroad. And talk about a crappy deal, there are resources that could help many of those mothers, if only they could get their hands on them.

Not to mention all the racially and ethnically motivated murders that have occurred, just in the time I've been alive. (I refuse to call it "ethnic cleansing." It's murder.) How many mothers had to watch their children being murdered?

Sorry. I guess this might not be making you feel very good. But I believe in thinking about this sort of stuff. Otherwise not only am I privileged beyond a large percentage of the population, but now I am also willfully ignorant. And as stated in "Black Beauty", ignorance is no excuse. (one day I think I will write a series on the truths I have found in fiction!)

I know I've written all this before. But I was really thinking about it once again yesterday. Wow. I am so fortunate. On days like yesterday, it really overwhelms me. The feeling of being blessed. Of having abundantly more than I either need or deserve. I've done nothing to justify my having so much, when so many have so little.

I hope I can hold on to this knowledge and this attitude, so that I can kick a little "self-pity butt" when he comes round.