P.S.

I never did find the journal entry about the hummingbird (looking through about 10 journals), but I did see the hummingbird in my backyard this afternoon! Can't believe it! I wasn't hallucinating after all. ;) I don't even have a feeder, and I sure don't have many flowers. But there it was, a very fast, very tiny, hovering green bird. Next year, I'm planting MORE red geraniums.

A Hummingbird in Memory Lane

I have been taking a little trip down memory lane. On Friday, Steve and I came back from an evening walk to discover a hummingbird in my flower bed. It was really unusual because though I know this is a place they can be found, I think I've never seen one here in the city. And it was late at night, dusk was on it's last legs. In fact, I almost thought it was a moth, but the flight pattern is so distinctive.

Hummingbirds are my favorite bird. I love them. And it reminded me of another time when I saw one, way back. Hummingbirds are rainbows are two things that God sometimes seems to "send" my way as a reminder of His love and faithfulness, and I knew I had actually written a journal about that other time when I saw a hummingbird.

So I started pouring back through my old journals, which is a task, let me tell you! I couldn't find the entry about the hummingbird, but I sure found a lot of other stuff. I found the journal written right around the time I took the leap of faith, applied for a job up North, and ended up in Oxford House. I found old heart aches and losses and disappointments. I found entries about camp. And about old boyfriends. About university. I found old failures and struggles. I found lessons I'd learned and some that I "relearned" several times. And some beautiful stuff too. Some fantastic times. I believe the general feeling is called "nostalgia." Though sometimes the yearning for the past was more of a relief not to be there!

Mostly I realized how much I had changed, or at least how much my life had changed! It was a strange feeling.

And it made me wonder about "The Question." Which I do occasionally anyway. If I could go back in time, would I change things up? Would I still end up married to Steve, and the mother of a child who is terminally ill? Well, the nice answer would be to say "No! I wouldn't change a thing!" But really, sometimes it is tempting, when things get tough, to think the OTHER way. Think about how great it was BEFORE all the pain and loss and sadness. When I could go out when I wanted and have fun, be carefree. When people described me as spirited and lively, bubbly, even "plucky." When I was thin and had long hair, nice clothes and good make up every day. Ya know?

Well, the journals were a good thing for me, in a strange way. Yes, they were full of happy times and good memories. But they were full of other stuff too. They were full of the inner workings of my heart, not just how it looked on the outside. So I shared my insecurities there. And the times I was lonely. Or felt a failure. The things that I struggled with. They were a more realistic picture of what my past was.

And it was great. Lots of good stuff. But going back there would mean becoming that person once again. It would mean I would feel wonderfully thin, and pretty, young-spirited and bubbling over with life. (Yeah, I don't feel like that much anymore. Grief can take the fun out of life and kids can take the thin and pretty out of you too!) That part sounds good.

But I don't really like the trade off. I'm done with the struggles and problems from that time of my life. I don't want to go back there. There was also lots of less that great stuff about the person I once was. I don't want to trade back the me I am now for the me I was then. (if only I could trade back the body and keep the experience!!)

Partly because I AM still that person. Underneath all the grief, I'm pretty sure there may still lurk some spirit, maybe a sense of humour and fun. And because letting God take you places in life doesn't make you LESS of you. The blows of life chip away and refine the picture, making you MORE into the person God always intended you to be.

Hammer blows are not fun. They are painful. But I don't want to stop the process, turn it back, or mar the finally product. I want to see this all through, to the end. I don't want to lose the maturity that will be formed, that I can already see from looking back in my journals.

And most of all, because as hard as this is, loving Joel and losing him, it is a privilege. I've said it a million times, if I could cure him I would. But I'd never, never choose to give him up over having him in my life. Or Caeden. Or Steve. They are the family God has given me, and I love them. This is where God wants me to be. In the end, that is good enough for me. I wouldn't trade that place for the world.

Another Little Update

The meds seem to be working on Joel's irritability. Or pain. Whatever it is. The last 5 days he has been much happier, even smiling and laughing once again. Which is a huge relief and makes me very happy.

His seizures have NOT become more controlled yet. In fact, the past three nights he has had increased seizure activity once again. It is easy for me to tell this now, because if he has a prolonged, intense seizure, his 02 falls and the monitor goes off. This doesn't happen for the shorter, "smaller" ones, just the longer, "bigger" ones. (Short and long refer to the actually time the seizure takes, smaller vs bigger have to do with the intensity of the seizure, which seems somewhat correlated to length, but not always directly connected, if that makes sense. For those of you who are really interested in seizures from a medical standpoint, or from your own children.)

So the sat monitor has been going off for the past few nights. I can somewhat counter-act this by placing him on a "low dose" of 02. This brings his oxygen level up enough that it doesn't drop below 90 when he has a seizure. What I can't do is rid myself of the unease I feel as I lie in bed and hear the subtle but distinct noises of the seizure activity.

This morning (5am), after lying in bed and dozing on and off to the noise for about an hour, I just got up and got him up too. He was wakeful between the seizures anyway, and I didn't want him to wake Steve up. Plus I figured that at the end of the extended period of seizures, he might have a bit of a crying jag before falling asleep (which he did).

In any case, I didn't get much sleep last night. I'm ok with that. It is, thankfully, Sunday, and I got a bit of sleep later in the morning. I'm just happy that Joel is happier.

Of course, not too crazy about the uncontrolled seizure activity for several hours at a time. I just gave Joel his first dose at the second and final "step up" for the med that the neurologist gave us. I know that she'd say we might have to wait at least a week until the meds work, but...? Maybe I have been spoiled, but when we have upped his Keppra in the past, it has worked almost immediately. This time it's gabapentin, but it's hard not to get a bit concerned when the seizure activity seems to be almost increasing again, while we are upping the meds.

But that is what this disease is like. Every time a problem is fixed, you go back to dreading the day with the problem that can't be fixed anymore. For now, I am just happy that Joel is smiling once again. His laugh is so beautiful.

Truth in Fiction: Part Two

Well, I asked my husband about the first blog in this little "series." He compared me to PT Barnum, but I no longer remember the quote. It was more in the nature of a complaint, than a compliment, though.

I believe his general charge against me was I said that I wouldn't write about the Bible, because it wasn't fictional, and then I DID write a story from the Bible. I think the nature of his charge was that I was guilty of false advertising, or of saying one thing and then doing another. He said he was under the impression I was going to write about a book I was reading and then I did no such thing.

I tried to tell him about artistic license and how sometimes what you write takes on it's own life, how you can end up in a direction you hadn't really planned. I think he may have remained unconvinced, but he hastened to assure me that it was well written. Good save, Steve.


So I hope no one else felt I cheated them, or tricked them with sleight of hand, or was just plain old confusing. The Parable of the Lost Son just leaped out at me when I wrote my introduction as a beautiful example of how a story can add emotional weight to a truth. Make us understand it in a fresh and powerful way. I'm not saying the truth always needs to be "dressed up." I'm just saying there can be something very special about hearing it in "story form."


And I'm going to apologize ahead of time. Sorry to Steve and everyone else, because though I am going to write about some beautiful books mostly, I will quite likely find myself unable to entirely leave the Bible out of it, and certainly not God, because I believe that ALL truth is God's Truth.


And I'm going to add a further note about fiction, good vs bad. Something I MEANT to say in my first blog, but then I got carried away by a beautiful story. What I wanted to say is that while words feed our mind, books are often like a garden full of both beautiful and nourishing plants, and also weeds. Some books are full of so many weeds that it is hardly worth trying to root around them searching for that last withered potato. These are books I try not to waste too much time reading. And I certainly don't recommend them to others.

But in any book written by a human being, you are likely to find some weeds here and there. That is why you are a "gardener." It's your job to be discerning and decide what is edible and nourishing, or will beautify the living space of your mind, and what will be entertaining but worthless, or even noxious. And it is your job to decide if this book "garden" is worth the weeding, or if it is just not worth the effort.

This is my disclaimer. My favorite books are ones which I feel are so full of roses and lilies, of tomatoes and cucumbers, that if I see an occasionally "weedy" portion, it troubles me not the slightest. I merely toss the weeds away and continue. It is our job to learn how to garden our minds via the written word. Which means I'll be expecting this of you. I'm sharing the good stuff I have found. But if you read a book I mention, and you find the occasional weed, I'm totally leaving the responsibility with you. Books written by humans are imperfect, just like the human who wrote them. If you are reading this, then you obviously have a brain of your own, and I think you can figure this all out. Right?

So let me tell you about a book I love. It is a tricky little book, because it appears to be a children's book. But I have read it many times, and every time it amazes me. I feel sure that the main audience is meant to be adults. The Little Prince was written by Antoine de Saint Exupery in french originally and my copy is a translation. I have NO idea how you say de Saint Exupery, at all, which is why you will not see one of those (pronounced: ) notes that normally come in a book review. In fact, every time I try and tell someone about the book I get embarrassed because they invariably ask me who the author is. So if you have some idea how it is said, please, please leave me a comment.

And now that I have started off with the book, I find I hit another difficulty. The same one I had when I tried to tell Steve about the book I love. He asked me, quite reasonably, what the book was about. And I was stymied. As I am now. Because I could give you a description of the "plot" of the book. But I find in doing that I would be guilty of one of charges the book makes against us "grown-ups." It says:

When you tell them (grown-ups) that you have made a new friend, they never ask you any questions about essential matters. They never say to you, "What does his voice sound like? What games does he love best? Does he collect butterflies?" Instead, they demand: "How old is he? How many brothers has he? How much does he weigh? How much money does his father make?"
Only from these figures do they think they have learned anything about him.

And I find that if I give you the plot of the book, I have not told you any of the "essential matters" about the book. But for the "grown-up" who reads this blog, I will take the advice of the book itself, and give you the plot out of forbearance. ;)

So the book is a first person account of a man who is stranded in the desert when his plane breaks down. And while he is there, he meets a little boy, a prince, who tells him the story of how he travelled from a distant star, and what he came across on his journey. In the end, the little prince returns to his star, for he has left behind a rose there, a rose he loves...

Yeah, it doesn't sound like much, does it? The back of the book does a better job, much better, but it is longer and also it would be pretty lame for me to fall into something I would call plagiarism in one of my students, even if I did name my source.

But I'd rather get more into the heart of the book. Into the some of the beautiful things found inside it.

For example, on the journey this little prince makes, he comes across a small planet with a businessman as the single occupant. This businessman tells him that he is very busy doing something of "consequence" as he is adding up all the stars he owns. He owns the stars, he explains, because no one else has thought of it, first dibs, so to speak. So he adds up all the stars, writes the number on a piece of paper, puts the paper in a drawer and locks it with a key.

To which the little prince replies:

"I myself own a flower," he continued his conversation with the businessman, "which I water every day. I own three volcanoes, which I clean out every week (for I also clean out the one that is extinct; one never knows). It is of some use to my volcanoes, and it is of some use to my flower, that I own them. But you are of no use to the stars...."

And so this book illuminates a truth: it is of no consequence to own something, if you are not of use. Houses were meant to be homes. Cars were meant to be transportation. Family and friends are there for us to love and assist. And every possession is useless unless used with hospitality and generosity. For owning something merely for status or greed is as silly as owning the stars, no?

There is so much in this book I love. But I can't reproduce the whole experience of reading it for you. I can just recommend you do that yourself. I will end with one of my favorite parts of the book. The little prince has finally arrived on earth and met a fox, who asks the prince to tame him.

"One only understands the things that one tames," said the fox. "Men have no more time to understand anything. They buy things all ready made at the shops. But there is no shop anywhere where one can buy friendship, and so men have no friends any more. If you want a friend, tame me..."

The fox tells him:

"The wheat fields have nothing to say to me. And that is sad. But you have hair that is the colour of gold. Think how wonderful that will be when you have tamed me! The grain, which is also golden, will bring me back the thought of you. And I shall love to listen to the wind in the wheat..."

Later on, after the prince has tamed the fox, he must leave and continue on his journey. The fox says he will cry now. The little prince is dismayed. He didn't want to hurt the fox, and now he feels he has done him "no good at all!" But the fox assures him that being tamed has done him good, "because of the colour of the wheat fields." He then tells the little prince his secret:

It is only with the heart that one can see rightly; what is essential is invisible to the eye"

And so when I look at my son, in his frail and broken body, I say "what is essential is invisible to the eye. It is with my heart that I see you rightly." And when I think of how much I will cry when this little boy who has tamed me has left me, I remember that it has done me good. Because of the wheat fields. And so much more.

A quick little update

Today I spoke to neurology and to palliative care about Joel's irritability and his seizure activity.

The neurologist decided to up his gabapentin, and palliative care said that it could even be upped a fair amount more if this does not work. That relieves me, because one thing I often worry about is running out of options. I'm always happy to know there is still a trick left in the bag, so to speak.

They also told me that it was not necessary to bring him in for another work up. Whew. I'd have done it, no problem, if they thought it was a good idea. But like I have already stated, there hasn't been any other symptoms, it looks very much like what happened last year at this time. So I'm glad they felt it wasn't necessary.

Otherwise it would be a trip to the ped for the "move all the limbs, poke the tummy and check the ears and eyes." And a bunch of x-rays. And an ultra sound. And blood work. And this would mean either a lot of separate appointments, or even worse, a hospitalization. I'm so happy to skip it all and try what makes the most sense, upping the meds.

Palliative care also said that it was ok to use the clonidine I give him at bedtime for the times when he is inconsolable. Which was good to know, specially as I already had the go ahead previously and so had used it this way a few times. They did say that I might find that even a half the dose would work, and would not make him so sleepy. It leaves the system quite quickly and so can be used 3 or 4 times a day at proper intervals. It's not something I prefer to do, but like I said, I'm always happy to know there is still a trick left in the bag.

Because listening to your child cry is exhausting, and it works on my spirit even when I think I'm "tuning it out" emotionally, staying calm and collected and all that. It's pretty awful, even when you are trying to keep your emotional equilibrium. So I'm hoping that the seizures stop. And I'm hoping the crying stops. And I'm even hoping for the smiles to start up again.

The truth of fiction

I have been writing a lot of sad blogs lately. Well, who am I trying to kid, much of what I write is pretty sad, my parents (who are among my loyalist fans ;) ) call them tearjerkers.

So today I just want to write something in a different vein. About something positive, or maybe even beautiful. I'd like to write a few blogs on the truth I have found in fiction, highlighting some of my favorite books.

Before I do that, though, I need to write a little introduction.

Your mind is a living organism. And words are what feeds it. You mind will grow and develop depending largely on what you give it to nourish it. It will be shaped by what you give it to learn or think about. This includes the spoken word as well, but what I am going to focus on, of course, is the written words we fed our minds.

(I in no way claim to have come up with this analogy. It's been around for a long time. I don't know the first someone used it historically, but the first historical reference I know of is found in the Bible.)

We fed our minds a lot of knowledge. We read informational types of writing. We learn how to cook, we learn from "fix it" books. We read about history (though you can debate on what percentage is actual "fact.") and we read about science or medicine.

This stuff might all be true, but this is not the sort of nourishment I'm going to talk about (obviously) since I have titled this blog the truth of fiction. Because this sort of knowledge is all just a tool. That is great and I'm all for it.

But what I'm going to talk about is the sort of truth you can learn from fiction. Which I'm going to differentiate as wisdom, as opposed to knowledge. You can learn a lot of facts. Knowledge. But wisdom is when you learn how to use the knowledge, skills and experiences you have to live a better life yourself and improve the lives of others.

I'm not included my beloved Bible in this blog series for a very good reason. Because I'm writing about fiction, and I put the Bible in a very different category. It is the standard of Truth for all truth. I realize that not everyone who reads this will agree with me on this, but in the interests of truth and honesty, I needed to put this note of explanation about the Bible in here.

While the Bible is not fiction, it might be important to note it does contain fiction. That might have gotten some of you to "perk up your ears" and wonder what I'm going to say. Relax, I'm not spouting heresy. Jesus himself told stories, which we put in a special category and term a "parable." What they teach is a Truth. But the form it comes in is fictional.

For stories are powerful things. They have an amazing ability to travel through our minds and into our very hearts. Which Jesus understood.

So when He could have told his listeners that God loved them and forgave them, instead He told them a story. A beautiful story about a father and a son. It is one of my favorite stories, so even though I said I wouldn't include the Bible in my blog series about truth in fiction, I find myself compelled to do exactly that, as a perfect introduction.

You may be very familiar with this story. You may have never heard it. You can find it in the book of Luke, chapter 15 and starting at verse 11. I'm just going to recount it in my own words, a very loose sort of paraphrase and feel free to check up on me by reading it yourself.

There was a father who had two sons. And the youngest basically said "Look, what matters to me is getting my inheritance and you are still a LONG way from dying, so it's just not moving fast enough for me here. How about we skip the part where you die, and just get to what is important, me getting my cash." (that is totally my paraphrase, but what he said really implies this.)

The father gave the son his money and the son quite promptly moved FAR away (Let's just say he's not even planning to make it to Christmas dinner) and spent the money living like Brittany Spears in her heyday. Which is why, like Brittany, he soon found himself in financial straights. But unlike her, he had no way to recoup his losses. He found that the friends that money can buy don't last long when the recession really hits you.

So he took a job looking after pigs. (Remember, he's a Jew, so a pig feeding him is a horror, never mind having to fed a pig. ) I can't even think of a modern equivalent. Closest I can get would be Paris Hilton, or Donald Trump working as a garbage collector.

Despite lowering himself to one of the most humiliating jobs, he still can't scrap together enough to satisfy his hunger pangs and he starts dreaming about skimming off some of the pig fed. (Now picture Paris or Donald picking through the garbage for food.)

The fact that he is at the bottom of the bottom is what finally gets him thinking of home.

But he knows he has seriously goofed up. He remembers that his father is a kind and generous man. He figures that if he owns up to how wrong he was, and how unworthy he is, his dad might allow him to work for him as a servant, and he knows that his father makes sure his workers are very well fed.

And here is my favorite part of the story. That father who has been injured and insulted appears to be watching the road for him. I can just imagine that man, day after day, through all his tasks, continually glancing up to check for any figure approaching with this hope in his eyes.

Because while his son is still approaching, he recognizes this IS his son coming, finally. And he races down the driveway, hugging and kissing the son in the midst of his apology. That father welcomes him back into the family with great joy, he even throws a party.

This story is an illustration of God's love. He is the father. We are the son. And that is all I need to say by way of explanation. The story does the rest.

It gets the information that I am in need of forgiveness and that God is waiting for me to admit it so that He can welcome me back into his family, it gets that information straight through my brain and into my heart. Sure, I understand the truth with my mind. But now I also feel it in my heart. And God wants both parts of me. Because that is the only way it will move from knowledge to wisdom. The only way it will change me.

And this is what GOOD fiction will do (of course there is bad fiction, I'm not talking about that stuff). Good fiction will say something true in a way that not only gets to our mind, but to our heart as well. And that is necessary for the truth to be able to change us. For us to have wisdom, not just knowledge, we have to learn things with not only our minds, but our hearts.

And my favorite works of fiction do just that.

Sludge

I have definitely lost my stride. If I ever had it. The past few days I have felt like I have been trudging through mud up to my knees. I'm tired and I have no motivation.

Joel has been very irritable once again. It's going on three weeks more or less now. The first week wasn't too bad. I still felt optimistic that it was all just going to pass. Every now and then Joel will have one or two "off" days and it's no big deal. But as time goes on, it starts to get much, much harder to see the end of the unhappiness ever coming.

I guess I'm going to have to bring him in on Monday, or at least contact a doctor to see what we should do about it all. It is odd, the last time this happened, it happened at almost exactly this time of year. At that time Joel was thoroughly checked and when they couldn't find any reason for it, we put him on meds for neurological irritability.

And slowly, slowly, over time Joel "came back" to us. I got my playful, smiley, noisy little boy back.

But there is always this fear. That THIS time we won't get him back. That this irritability is a sign of something ominous. Or even just that it will take so long to get him back, like it did the last time. That I will have to wait for MONTHS.

You know what? Dying sucks.

I know that Jesus has vanquished death. I'm not afraid of death.

But the DYING part of it sucks. Really. I don't know who it is worse for, Joel or me. In some ways it's a moot point. When it is your child, it feels like it IS you. In fact, I have had to correct myself many times. Many times I have caught myself about to say MY neurologist, MY palliative care team, etc. etc. And then I correct myself. I don't say Joel's. I say OURS. Because that is really what it is. A group endeavour for the whole family, like it or not.

So I've been feeling a bit down in the last couple of weeks. I did have some plans of what I would do with the last couple weeks of the holidays, but... each day that Joel is not his happy self, each day that I have to sit and hold him for half an hour or more while he cries, each day that happens and I just can't figure out what the point is of actually organizing my bedroom.

I feel pretty wiped. Right now, one of those mythical days I joke about where I stay in bed under the covers eating potato chips and reading books, wow, one of those days looks pretty good. But there really isn't much you can do to escape when your child is not happy. Sure, I still go out for respite, but it's not without it's trade-off in guilt, knowing you left your unhappy, maybe even in pain, child behind.

I might be depressed. I sure am feeling sorry for myself. And helplessly immobilized.

There is something else I'd like to say though. On a more positive note. For those of you who prayed for my Dad, you especially will appreciate this. I just want to let you know that my Dad went in this week for a check up with his oncologist. Who told him that he now had a second life. He told my Dad that a healthy person who endured a perforated colon as long as he had would only have had a 50% chance of surviving the surgery. He felt that for my Dad, in the state he was in after chemo, with some heart damage, low blood counts, all the rest, that it was only a 5% chance that my Dad would pull through the surgery.

It's easy to forget, or to minimize it after it's over. But my Dad really was at death's door. And I really believe that God answered those many prayers of people asking Him to let my Dad stay with us a little bit longer. So thank you for praying.

It's a wonderful gift. My Dad is using his walker and is slowly able to walk a few steps without it. It is a slow recovery, when you have been as ill as my father. But it is so nice to have him come over to our house again, and see Caeden's face light up when Grandpa arrives.

Right now for me, its a slow trudge through the mud and the sludge. I hope I get to the other side one day. Does anybody have a helicopter?

Acceptance: Part Two

I've said this before, but once again when I sat down to write this, the fish school of thoughts darting through my mind vanished in all different directions when they saw the shadow of my blog looming overhead! There was a lot on my heart, but now I find my head empty!

I think I will revisit the one little thought minnow that is left in the net of my mind. The concept of "Acceptance." With a capital "A." I wrote a blog waaaaay back when I first started this blog, about the whole idea of Acceptance as a stage of grief, and the notion that I might one day find that stage. So long ago, in terms of what has happened.

I reread this blog about Acceptance, and it made me think quite a bit. I wondered, "Have I come to Acceptance after all?" Because I think that in some ways I find a difference between now and then. A difference in my internal landscape that made me wonder about that.

Well, I still have to say that I dislike the word itself. As I said before, acceptance sounds so acquiescent. Like giving up somehow. Resigned. Words that get my back up right off the bat. Yeah. It is hard for me to think of the word acceptance in this situation with out the word resigned rankling around in my brain, creating resistance to accepting Acceptance.

Of course, as a word choice, resigned makes a sort of sense in this situation. Reluctant acceptance (that word again!) of something you do not like but can not change. Doesn't seem appealing to me.

My dictionary also put in the word "surrender" in the definition of resigned.

Oddly enough, seeing that word made me feel initially more negative about it all, but then slowly as it sank into my skin with all it's connotations, I started to feel better about it.

For, strange as it may sound, I think that I have not become more accepting of Joel's condition and future. I think I have come closer to surrendering it. And I feel better about that. Here is why.

Acceptance means "to willingly receive, regard favourably, receive as valid or suitable." These are the points at which the word brings me up short, and makes me balk at it. I can't regard losing Joel as favourable. I can't receive it as suitable in some way. And to receive it willingly??

Surrender means "to hand over, relinquish, to yield.... " (fill in the blanks on what you yield to). This is what I am slowly learning to do. I am learning to surrender Joel, his health, his death, my pain, all of it. I'm learning to surrender it to God. I'm handing it all over to Him. I'm in way over my heard here. I surrender, not to an enemy, but to a trusted Friend. I'm yielding up something I find too difficult, painful, sad and ugly to work with myself into His hands in the trust that He is great enough, powerful enough, loving enough to take care of it all in a perfect way that I can not.

So when you don't find me in Anger, Denial, Bargaining, etc., in the times I manage to get beyond those states, I hope you may find me, not in the state of Acceptance, but in the state of Surrender.

And in that state I find something else that goes together with it. Peace.

Flashback

I'm going back in time with this blog. I've been thinking back to the time that Joel was first diagnosed, and we thought he'd be "less severe" in his illness. I wanted to share about that time.
It was very different from now in many ways. For one thing, I thought about Joel's death a lot less, of course. Everything was still new though, so in that way I guess it was more overwhelming and maybe felt more horrible? Joel was a lot more demanding in some of his needs (as was Caeden!) which made it a lot more difficult to manage everything. But I still did have all sorts of thoughts, feelings, and ideas bouncing around in my head to deal with.

That time period I spent a lot more time grieving what Joel would not "have" in this life and a lot less time grieving his eventual death, though of course both then and now I grieve both. But back then, I believed that my boy was going to learn to sit. I thought he'd learn to walk too, at least for awhile. And I thought he'd get his food orally, not through a tube. I looked ahead to many, many years of caring for him.

It was not a pretty picture. I'm just going to be honest here. This is how my mind thought at the time. Maybe you are a better person, maybe you would not have seen or felt it like that. But I did.

I was dismayed. How was I going to manage it all? How would the years play out? How would we ever have a "life" again? As I aged and things got harder, Joel would slowly decline. What if he lived to 20 or beyond, as some of the other children I know have. I'd be 58 when he reach 20.

Look, I realize that life isn't exactly over by then, but when I thought of being upwards of 55 and diapering, dressing, feeding, pushing a wheelchair (never mind transferring in and out or bathing) I was seriously overwhelmed by it. The thought of trying to manage all the difficult health issues for so many years gave me an anxious feeling in the pit of my stomach. My empty nest syndrome, when it finally came, would have a whole different level, because now my son would be dead.

It was a bleak picture. Joel "limiting" our lives more and more as we aged, finally leaving us be rift, completely devastated when he died. And we'd be coping with this grief while our last years of good health slipped away.

Maybe that sounds a bit mellow dramatic, but this is how the mind works when you have been hit by some particularly terrible news. And that is really what I thought our reality would be like.

I was grieving one sort of loss, without really being able to grieve the other way things could play out. I think maybe that was impossible. I don't think I could have really "felt" what both extremes could be like. So I grieved the one I thought was most likely.

Then it slowly changed. Joel's lifespan seemed to gradually decrease before my very eyes.

Now I never think about how hard it would be to diaper and bathe a 15 year old. That future has closed to me.

Now I long for other things. Now I long to see him sit. Now I wish he'd just be able to grab some toys. And now I worry, not about how I will cope with Joel's needs while he's alive, but how I will cope with him being gone. Ah, the way of life.

I don't really feel "bad" about grieving either of these things. Either future was grief-worthy. But now, if I could choose, I for sure would choose to keep Joel around and able to do even the limited things he might have achieved. When you love someone you'll make a lot of sacrifices to keep them with you, no matter how daunting the future looks.

This morning I did something I said that I don't do. I dreamt of Joel. It was a sad dream. I'm not going into all the detail, but in my dream I wept profusely over one deep sorrow. What was it? Joel could not hold up his head. In my dream I wept and wept because I just wanted Joel to be able to hold up his own head for part of his life. Then I could carry him under his armpits. I could lift him easily out of the bath. I could sit him on my knee in a different manner. I could carry him over my shoulder and he'd be able to look around. No, he can't see, but it was a dream, ok?

I guess I am sad about that, after all. I hadn't really thought of it before. Too much other stuff to be sad about, I guess.

I don't know why it was important to share all that with you. Maybe it was for the mother whose child with a PBD is going to be around into their teens or 20s. Maybe I wanted her to know that I think it is ok to find that overwhelming and difficult, and terribly sad. Since I have previously written about how I am jealous of such moms. I am. What a paradox. I am jealous and I'd "trade places" in a flash, at the same time I would again be horrified at the thought of seeing my son slowly decline and lose so much while I had less and less energy and health to manage it all.

There was a time, many years ago, when I was in a dark and difficult place. I felt that I had nothing. No job, no husband or boyfriend, no purpose... it was just a dark and difficult place. I remember clearly singing in church while I mused on it all and thinking "I've hit the bottom, and God is still here, underneath me." I felt that underneath my "life" I could hear a song playing, a "bass line" that never went away even when things were so low. It seemed to me I had nothing in life, nothing but God. And in that moment, God was enough.

There at the bottom, and I could feel God there, the bottom holding me up. Maybe that is what Jesus meant in his story about the builder who "built" his life on the rock. Even when the storms came, that rock was there when all else was swept away.

Whatever the future holds, however scary it is, no matter how dark it gets or how much I wish I could escape from the reality I face, I know that God is even at the very, very bottom.

Dear Doctor

Dear Doctor,


There are some things I wish I could tell you, but I'm too afraid you'll misunderstand. There are things I'd like you to know, things that I'd say if only I didn't worry that you'd think I was being critical, or even worse, ungrateful.

For I am grateful for the work you do. I fully respect your knowledge. I wouldn't come to see you any more if I didn't think you were capable and professional. I thank you every time we leave your office, and I hope you don't think I'm just being polite. I mean it.

I think it must be hard to be the doctor of a child who is dying. Of course, it's nothing compared to being the mother of a child who is dying. Still, I appreciate that we are patients who might not always inspire the happiest of emotions. I know you might go home at the end of the day feeling tired, or even sad.

That is one of the things I want to talk to you about. Sometimes I think that since you can not do much to help my child, certainly since a cure is beyond you, you feel a bit helpless. Like you can't do much for us.

In the strictest sense, you are right. The one thing I want the most is for my child to be healed, and this you can not do. What I'm not sure you understand is how much you still can do for both me and my son. The process of dying is not easy for either of us. You might not be able to offer much help physically, but there are some ways that you can make life so much easier for me, and thus for my son as well.

These are the things I wish you knew. The "extra miles" I wish you would take. I think you are a kind person, and would not normally refuse the request of the mother of someone dying. I think it is just that you are busy, stressed out, and do not realize the gift you could give us.

So I am writing this letter to you. To show you the ways you can help us through.

Things like being very, very transparent. I put two "verys" in there for emphasis. What I am asking for is extra time and care with your explanations. I want the true, the WHOLE truth and nothing but. One of you actually took the time to SHOW me the photos of my son's retinas next to healthy ones and explained it all to me. It was worth so much more than merely telling me my son's retinas had swollen nerve endings. Can you see how much it meant to me that he did this?

I wish that you could always sit down with me and show me the x-rays and MRI results. It is so hard for me to explain to the other people in our lives what I can only barely grasp. Not to mention that what we hear alone is so hard to remember, but what we hear and see stays with us so much longer. Or that I have absolutely NO idea what things like the numbers for his liver function really mean. Sometimes you don't even tell me what a "normal" range is. I forget to ask because you move on to something else, and then I have to try and look up INR on the Internet so I can figure it all out.

It is so hard for me to explain to the other people in our lives what I can only barely grasp. I need to explain things to all the aunts and uncles, cousins, grandparents and friends. You could make this all so much easier. Not to mention the other doctors who ask me questions about my sons' health. They ask me the results of an MRI that I never get to see, and I sure can't remember your exact words anymore. Which leaves me fumbling to explain "something about ventricles were enlarged."

I know you are busy, but you can really make a difference for me in a real and practical way. It's my son, I really want to understand as much of this medical stuff as possible. I'm an eager learner!

Which brings me to how much I appreciate when you are confident enough to admit what you don't know. In particular, the doctors we have had who actually contacted a doctor they didn't know for a "second" opinion. I don't think those doctors fully realize how much more at ease I feel, both with them, and with their suggestions. Every discussion with them after that is different for me. I trust them.

And please, please do not just look my son's illness up in an old medical text or even worse, Wikepedia. My son has a specialist who works in the same hospital. This specialist has the best and most current information on my son's condition. If you are going to take outdated or general information, you might as well just ask me. Unless your textbook is specific for metabolic conditions and printed in the last 2 years, I really do know more about it. But what I really wish you would do is consult our metabolic specialist with your questions. I know he is busy as well, but I think he wears a pager, and since there is little he can do for us either, I don't think it is too much to ask him to take a moment with you. My child is dying, and this is an extra mile you can go to make things a little more bearable.

And not just transparency with test results, or gaps in your knowledge. Please, don't protect me, just say what you think, say what you mean. Don't tell me I'm being referred to "Symptom Management." Tell me it is also Palliative Care. Remember, I want the WHOLE truth. The doctor who looked me in the eye when he told me my son might or might not walk, talk or crawl did so with compassion. He was also honest. He has my confidence and respect.

And I know that you have protocols and procedures you must follow. I know some rules can't be bent. On the other hand, some of you think "outside the box." I know you must "do no harm," and I'd expect no less from you. Sometimes you can be within these guidelines and still outside the "box." I hope you can take that mental leap, because that way we can often come up with ideas that make our lives easier.

I very much appreciate the neurologist who offers to write a memo to the rest of the staff explaining why we don't want to bring our child in for prolonged seizures unless they are immediately dangerous, but we might call asking for help to decide on the question. Or the Palliative Care Team who allows us to give our son oxygen "as needed." And the ENT who is willing to consider a surgery to sew our child's epiglottis up on his tongue in order to help keep him from obstructing when he breathes. Outside of the box thinking.

You know the little details that make my life so much easier? The doctors who give me their email addresses. The ones who let me speak directly to them, instead of filtering everything through a receptionist. The ones who make time for last minute emergency appointments. The ones who go out of their way to "piggyback" appointments and procedures. The ones who send out appointment notices instead of telling me to phone in a couple of months to book the next appointment.

And please, as much as possible, keep in mind that when you see my son, he's not at his best. You see him when he is sick, when he is tired, when he is drugged up from medication, or when it is his normal nap-time. I wish you could see him when he is alert and happy. When he is playful and smiling. So please remember that what you see lying in that hospital bed is not a little lump that just lies there breathing. Remember that is a little boy with a visible personality, complete with likes, dislikes, quirks and all the variations of emotion and feeling that humans have. I know I don't seem like an impartial witness, but please realize you can't get the whole picture just by looking at him for 5 minutes.

There is more I could say, more I'd love to say, but you are busy, and these are some of the big things I wanted to tell you. In any case, you could probably figure some things out on your own, as long as you realize the power you hold to help us.

You can't cure us, that part is inevitable. You can still make a difference. You can help us have the best time together possible, and you can make dying a lot "easier" for us all. You might never know the gift this is, but I will NEVER forget it.

I once read a twist on the expression "Anything worth doing is worth doing well." This one said that "Anything worth NOT doing, is worth NOT doing well." You can't cure us. But this not curing us can be done poorly, or it can be done with excellence. I hope you will live up to my trust in your compassion. I hope you will go the extra mile in not curing us.

In the end, you will have nothing but my gratitude, and the knowledge that you made some one's world better and easier in the worst of times. But maybe that is enough for you. I'm guessing that is why you got into medicine in the first place.



Sincerely,

A mother

Whew!

Here's the scoop on todays appointment with neurology:

First of all, I love our neurologist. She's really kind, and I think most of the time she has a clue about what is important to us and why. I really appreciate that.

The good news is that we CAN up the dose of Joel's Keppra a fair amount, as he has gained quite a bit of weight since he was first put on it. Yaaaaay! Keppra is a good med for us, so far it has given Joel NO side effects, not even making him drowsy in the initial period. I LIKE it.

But the biggest and best relief was when we talked over the "plan" with her about how to deal with a situation where Joel is having extended seizures. She agreed that in Joel's case it would be "reasonable" to wait considerably longer than half an hour. She felt if I was monitoring him for any changes, like turning blue, (or the sats going down) and nothing like that was happening, we were ok.

She totally understood that since Joel can easily have ongoing seizure control problems, we would not want to rush in to emerg each time, where she said staff might try and help Joel in ways that were intrusive, unnecessary, or cause Joel distress. She did not feel Joel's seizures were going to cause him enough trouble to warrant heading in to emerg.

And Joel, strangely enough, even cooperated by having one of the exact seizures I was telling her about so she got to see it. She confirmed that yes, this was a seizure for sure, and yes, she didn't feel it was a kind of seizure that would be particularly harmful if it occurred in an extended period.

She did make me promise to keep phoning them right away with any changes in seizure activity, or if the new prescription does not work. Which I do anyway. Good news is that it sounds like since they are increasing the doctors on staff in the department, there is now going to be someone on call basically 24/7 so I can call them if I'm not sure about coming in to emerg or not. And she said she'd send a memo to all the staff about Joel, so they'd know about his situation! (now as long as they read it, cause you already know how doctors are about memos!)

She assured me that ambulance staff DO carry the rescue meds (which another doctor had told me was NOT the case) (so you are right, Heather). She said she'd still like to hold off on giving me the rescue meds, as they usually don't prescribe them until patients are at least 10kg. But if Joel reaches that weight, she'll likely be ok with it. I don't care, as long as the ambulance has them.

So nothing but good news all around. I was very relieved that she understood about us not wanting to rush into emerg unless it was really necessary or helpful. It always makes me happy when the doc thinks my actions were "reasonable" ;) . I was even more relieved that she didn't think the long bouts of seizure activity were "particularly harmful" though "we want to try and avoid them." It is just so relieving to talk to her, she is so calm and matter of fact. I don't even get (as my friend Jen calls it) "crazy eyes" from her about how we are handling things with Joel.

Whew. Thank you God for good doctors who try and help you make the best of the situation!

Awake in the Night Time

Well, last night was one of those "dunking" sort of nights. Don't worry, everything is ok with Joel so far. I say with reservation, because after a night like last night I never really know.

We started off ok. I put him on the CPAP and it did take awhile for his O2 sats to go up enough, but then he was ok. As long as they can get to over 90 in a couple of mins., they slowly climb through the night.

So at 3:30 am the monitor went off. It was no big deal though, as his sats were at 98%. It was his heart rate, hovering around 80 that was setting it off. This has happened once before and the respiratory therapist and I both agreed that it wasn't really worrying as it was only down slightly, and everything else looked good. We figured it was just that he was so very relaxed with the CPAP on.

But I had to turn the CPAP off, because though his heart rate would go up when I rubbed his back or arm, within a couple of minutes it would go back down and start beeping. Which would make it impossible to sleep.


So I turned off the CPAP and his heart rate immediately went up. I climbed back in bed, but not even an hour later the monitor went off again, this time (no surprise) because his O2 sats were falling below "normal." So I got up again and put on the nasal cannula with the O2.


I lay down again, but before I could really get into a deep sleep I started to hear strange noises coming from Joel. I lay there for awhile in a sleep-stupor wondering what he was doing? As they kept happening, my mind grew more clear and then I decided I better get up to take a look.


I went over and switched on the light (poor Steve). Hmmm. Strange. I think he's having seizures... They are not quite like his "usual" ones, but I grow more and more sure that he's having seizures and they are not stopping. After waiting about 2o minutes, I decided to move Joel kit and caboodle downstairs to try and let Steve get a bit of sleep.


So I haul down the oxygen and the monitor and Joel. I sit on the couch holding him and watching seizure after seizure crawl across his little face. This time it looks a bit like gagging. His eyes are different, like they normally are in a seizure, but this time there is a lot of twitching and strange "blinking," all sorts of subtle and strange little facial movements.


So I hold him and rock him and off and on I cry a little bit. It's just a dunking, but I never know how cold the waters going to get or how long I'm going to be there.

I'm starting to wonder if I should wake Steve to take Joel in to emergency. I decided to try and wait it out. Joel has seizure after seizure, one has barely ended before a new one starts and sometimes they just meld into one another, and this goes on for at least an hour and a half. Maybe much longer, I have no idea for sure how long they were going on before I got up.

The neurologist and nurses have told me to bring Joel in if his seizures last more than half an hour. As you can tell, I am loathe to do so, and ignored this advice. It is one of those troubling things about Joel's condition, this uncertainty about what to do, which advice to follow, when to really bring Joel in.

The neurology doctor has previously refused to give me the rescue meds used to break children out of seizures. Too dangerous for Joel. If I remember the words correctly, they have only about a 50% chance of working. And they can have a nasty side effect, particularly on a child like Joel who doesn't have much tone. They can stop him from breathing, because they relax the muscles so much.

Of course, if Joel's seizures are strong enough, affect his breathing too much, or he just can't break out of them, then taking Joel to the hospital to try the meds is a good idea! But since they are not too crazy about them, neither am I.

My threshold for seizure tolerance had grown quite a bit since I know so many children with this disorder who have had ongoing problems with controlling them. Before all of this, an hour and a half of seizures would have terrified and horrified me. Now they make me sit and cry and worry.

But not enough to trundle Joel over to emerg and risk another lengthy hospital stay when they will quite likely pass on their own, and I doubt there is much they will do in emerg that I am not already doing. Plus, if the seizures are going to make Joel stop breathing the last place I want this to happen in the middle of the night is in our car travelling to the hospital. I'd rather wait at home and call an ambulance if we need it.

We will, of course, look into upping or adding some seizure meds for Joel. But that takes time and can be done as an out patient. That's my thinking. In fact, we have an appointment for Friday to talk to the neurologist and discuss it all with her. I'd like to try and come up with a reasonable plan for these events. Maybe see if I can convince her to give me the rescue meds under the strictest understanding that I'd only administer them if Joel's breathing had already stopped and if an ambulance were underway?

But at 5am in the morning the water is cold. I am chilled and frightened. Is this "just" a dunking? Or is it the sign of something more ominous? And I doubt and second guess my reasoning over my choice of actions the whole time I am watching Joel and shedding silent tears at the damage to his brain that is causing this reaction.

I feel on a razor's edge, balancing everything out. Quality of life vs seeking medical attention vs trying my hardest to help Joel vs understanding all the time that I can't save him. Trying to trust God through it all while wondering if I'm really getting it "right."

I started this blog on Wednesday, and now I'm finishing it on Thursday. (Sometimes I get a lot of interruptions.) Last night was a wonderful night of sleep. We started on CPAP, we ended on CPAP, Joel's oxygen and heart rate were good all night. And no seizures, that I know of. Tomorrow we will discuss it all with the neurologist. I will update you on how that goes.

Until then, thanks for your prayers. My Dad was home last night on an overnight pass. He was very excited about that. Today or tomorrow he'll be discharged. I'm very thankful for that. This doesn't mean that his leukemia is "cured." It is unlikely that any such thing has happened, short of a miracle. But for now he has his remission, which seems like a miracle in itself, and we will rejoice in that for as long as it lasts.

IAM and Afghanistan

I'm going to comment today on something that is technically none of my business. By which I mean that it has little do with Joel. I have never been to Afghanistan. I did not personally know any of the aid workers who were killed there this past week.

So I'm taking full advantage of the artistic license afforded to me via the Internet by this blog.

Because this event has been on my heart. I never knew Dan Terry, or Tom Little. But I do have friends who knew them. They knew them because their own family spent many years in Afghanistan working with IAM mission.

The Penner's home is full of knick knacks and artwork from Afghanistan, a house I lived in myself for quite a few years as a boarder while the "kids" got their post-secondary education. I heard lots, and lots of stories about life in Afghanistan. And I saw first hand how the experience affect their lives, both bad effects and good, but mostly good.

So I guess I do have a sort of right to a close interest in this subject, and though I did not know the slain workers personally, it feels really important to my heart.

And my heart feels sad. Not just because some very loving people who were doing something important were lost. But sad because of the reaction some people have to it.

I have read some comments, from "everyday" people written under the news stories on the Internet. I didn't find any that were negative about the people who were killed.

However, I did find a lot that were negative about Afghanistan. They were angry. They were disillusioned. They were bitter. Yeah, they were negative and even vindictive.

This made me very sad, because though I don't know these slain workers personally, I know them through the stories, and I know how my own friends felt about the people of Afghanistan.

So I feel very safe in saying that if these two men, Dan Terry and Tom Little, read those comments, they would be very distressed. This reaction of angry retaliation would be the last reaction they wanted.

This was not the first time they had run into hostile people. It's just the first time they were actually killed. And these run ins never stopped them from loving.

Much has been made over the question of whether these men were proselytizing or not. I know first hand from my friends that they were tremendously careful to avoid anything that could even be remotely construed this way. I know that they did not have Christian literature to hand out. It is something they didn't do, something that distressed them when others did it, because it jeopardized all missions. In fact, some people from Christian circles have criticized missions like IAM this for the very reason that they do not preach or hand out Bibles.

These were people of integrity who would not break their word. They made a promise not to preach and I know they kept it.

They knew they did not need to preach. They understood that sometimes speech is just a wind blowing. They had a different language.

They spoke with their very lives. Whenever they were kind, whenever someone was helped, they knew what the action said. They knew they didn't need to hand someone a Bible. Because when they handed out a pair of glasses, they knew it was saying "Here is love. Here are my hands, in the place of Jesus' hands, to show you the love of God." All without a single word being spoken.

And here is the true power to transform an evil situation. Not with armies. Not with policies. Not with governments. Not with withholding aid. Not with careful reporting. Not with the censure of nations. Sometimes these things might be helpful, but I have never seen transforming power in any of these things.

The real power lies in ordinary people filled with extraordinary love willing to do anything that God tells them is necessary. Regular people who will not let anything turn them back from giving love and compassion, a power from God which can truly transform hate to love, evil to good.

So if you read this, I'm asking you to do something difficult. Please, do not take away from what these men spent their whole lives doing. I've heard the stories, I know they made a difference for good in this country. If the love of God resides at all in you, follow the example of these men. Respond in love. These men loved the Afghan people. They were wise men and I trust their judgement here.

When you think of it, when you hear about Afghanistan in the news, let's pray for this country and it's people. Even the Taliban. And now that you know about IAM mission, and the work it does there, please say a special prayer for the families of these people, and for the work of the mission to continue.

Eyes

Sometimes when I look back over my blogs, I feel like I'm a "Chicken Soup" book author. Other times I wonder in surprise at how honest I've been in going to some pretty dark places. I feel like this blog must look like a teeter-totter, see-sawing back and forth between optimism and heartbreak.

One minute I'm declaring how Joel has taught me so much and I'm even grateful for how God's used him to change my life, and thus me, for the better. The next minute I'm talking about morbid thoughts, or how things annoy me, or even anger me.


I wonder "Do people think I'm being way too upbeat, with no idea how hard Joel's death will really be?" when I write something more "encouraging." (by the way, I KNOW that in a lot of ways Joel's death is going to be way harder than I can imagine.) Then I wonder on another day and another blog if people think I'm just complaints, blackness and despair.

All I can say is that I believe everything I write and it's all totally sincere. It just reflects me, in all my changeable humanity. So one day I explore the negative thoughts and feelings. Get em out where I can see them. Acknowledge them, so they are not as scary, and thus not as powerful. Other days I am encouraging myself, and hopefully you too. And I do believe every word I write, but putting it "down" here on this "page" gives it more weight somehow.


In a strange way the bad stuff loses power when I write about it. And the good stuff gains power when I put it in here. I like that. I hope that explains the sort of see-saw nature of this blog.

So now I'm going to share some encouraging words. Words that encourage me. It doesn't mean my internal landscape is perfect. It certainly doesn't mean I've got faith just nailed right down. It doesn't mean I don't have doubts, discouragement or anger. But I do believe every word I write here, in spite of all of that.


A little bit ago, I was reading a blog and the author asked for people to write encouraging Bible verses in the comments. At the time, I couldn't think of any that just didn't sound so.... like words she already had heard a million times, words others would also have said to her over and over and while there is nothing wrong with favorite verses, in my mouth at this time it just sounded.... trite. (I'm NOT saying the verses WERE trite. I'm just saying MY saying them there would SOUND trite. There is a big difference)

But now, a few days later, a favorite verse came to mind. I love this verse. And it's just been going round and round in my head since. And so, like many other things that go round and round in my head, I'm going to put the words down here.


These words are from the Old Testament. The occasion around them is that a king, King Asa, who worshiped God, had made a boo-boo. A blunder. A mistake. Previously, he had trusted in God when enemies had tried to attack his country. But this time he left God out, and tried to fix up the problem himself. God was not pleased. He wanted Asa to trust in HIM. So God sent a prophet to give him a message. And here are some of the words the prophet said.


And I'm going to write them out from FOUR different translations. Why? Because that will give a better sense of the original words. Because I couldn't choose which version I liked best. Because the words are awesome, and I wanted to say them four times. For emphasis. (You shouldn't be surprised, haven't you discovered how much I like to repeat myself yet!!)

So here they are:

"For the eyes of the LORD run to and fro throughout the whole earth, to show Himself strong on behalf of those whose heart is loyal to Him." NKJV


"For the eyes of the Lord search back and forth across the whole earth looking for people who's hearts are perfect towards him, so that he can show his great power in helping them." The Living Bible


"For the eyes of the Lord move over all the earth so that He may give strength to those whose whole heart is given to Him." New Life Version

"For the eyes of the LORD move to and fro throughout the earth that He may strongly support those whose heart is completely His." NASB

I love this verse. I love the picture it gives me. Of course, the "eyes" are figurative. But in my heart I picture God searching, searching, searching. Ceaselessly scanning for a heart that loves Him without reservation. A heart that is loyal. Searching with great desire for people with hearts given totally to Him.


And what is the desire that moves God to search with great yearning? So He can "strongly support" those people. So that He can give them strength. So He can "show Himself strong on their behalf."


I think one reason that I love this verse is that it DOESN'T say so that God can make their lives perfect. It doesn't say so that these people will be problem free. It doesn't say so that God can remove all heartbreak or trouble. It doesn't say so that their children won't have to die.


Things I know that God isn't promising me at this time.


God IS promising strong support. He is promising to give strength. He is promising to show Himself strong on my behalf.


Mostly what I love about that verse is that God is so anxious to do this, He's longing so much for it, He is desiring it so greatly that He is searching, searching, searching, back and forth, back and forth to find that heart. Where is there a loyal heart, so that I can support you? Not just support you. STRONGLY support you.


Here is my heart, God. It is all Yours. May Your great power give me strength.

Water-logged

One thing I hate about life with Joel is the dunkings.

I can never seem to prepare for them. Even when I'm anticipating one, I can't anticipate it.

I am floating along in the boat. It might be a bit choppy, but we have hit equilibrium, so it is relatively calm and stable.

And then - DUNK. I'm suddenly in the water.

It really reminds me of the summers I worked at a camp. Let me give you some of the background, for fun (for MY fun, since I loved that camp). I spent 3 summers, from April to August, working at a camp located on a tiny island between Vancouver Island and the mainland of B.C.

It was one of the best things I've ever done with my life, though I came to it a bit later than most people I know. Most people I know started working at camp immediately after they were too old to attend camp themselves. I have only been a camper once in my life. And I didn't head to camp to work until I was 26, which isn't exactly ancient, but I was the oldest person there who wasn't the cook, the nurse, the bus driver, or the camp director.

And due to my inexperience, I got a lot of "on the job" training, and usually from people who were a few years younger than me. It was all totally great, though at times I sure felt like a dweeb, the uncoolest person at camp. Everyone else knew how to canoe, how to shoot a bow and arrow or rifle, etc. I was good at craft shop though! One summer I spent a whole month working there, teaching campers how to make "stained" glass, or paint wooden knick knacks.

I got a lot better at canoeing over time. And I learned that I absolutely LOVED row boats. Though at camp we didn't have any sleek racing skiffs! We are talking what was in essence a yellow bathtub with oars. Honestly, the row boats were not really considered too cool by the other staff. Canoes were popular, and kayaks. Clunky yellow row boats, not so much. But I loved them, and eventually had the rep as the best rower at camp. Perhaps a dubious distinction, but I was proud of it!

All three years there I wanted to learn to kayak. But one thing held me back. The wet exit test. Before I would be allowed to take out a kayak, I had to roll it over, so I was upside down in the water. Then I had to "sit" in it calmly and tap on the sides of the kayak for three counts before I exited the kayak and came to the surface. They made us do this to prove that we wouldn't panic and get trapped under the kayak if it flipped.

I made a few unsuccessful attempts. It really wasn't so much that the freezing cold shock of the water disorientated me. I wasn't really panicked. I just couldn't seem to "stay" in the kayak. Back then I was, um... let's say A LOT slimmer. And working at camp, also a lot more muscular. (that's my story and I'm sticking to it.) I would try to tap the kayak three times, but I just fell out into the water as soon as I let go of the sides.

And though I'd try and explain, the kayak teachers wouldn't hear it. Sorry, that was only TWO taps, and I need THREE. Or, even worse, "You tapped three times, but it was really a bit too fast." (Because I was falling out of the kayak, not because I was panicked!)

The reason they didn't believe me had a lot to do with the very nature of the ocean itself.

The ocean is utterly captivating. From like a glass, to choppy little waves, to great monsters. You never know what you will find underneath. I learned about limpets, gooey ducks, urchins, starfish, bull kelp, oysters, crabs & more. Tides change the face of the world several times a day.

I learned enough to do a "beach study" with the campers. My teacher was the camp director, Dan. Let me tell you about Dan. This is becoming a story, within a story, within a story. But Dan has since passed away from skin cancer. I guess this is my little tribute to this special man.

I'm not sure what he thought of me when I first arrived. He did hire me, surprise, since I had no camp experience. I think what might have cinched it for him was when the application asked why I was applying for camp and I wrote the whole story of how I had quite my job last minute because I felt it had become unethical and I believed God wanted me to work at camp instead.

In any case, I think his first real impression was that I was a bit older, sort of stuck in my ways. Because one of our jobs was to clean the camp. I was not too impressed with the camp cleaning supplies and asked if he had any Mr. Clean. They didn't.

Myself being the somewhat independent-minded young woman that I was, and having certain ideas about cleaning and how it should be done, I promptly purchased some Mr. Clean to use when it would be my turn to do cleaning.

I think this whole episode annoyed Dan until he saw how I cleaned. I am pretty sure he thought I was some hottie-tottie know it all sort of person, because he sort of admitted as much later on.

You'd never believe it now, I'll bet my mother-in-law is in utter disbelief due to what she finds in my house every time she arrives with her whirlwind of cooking and cleaning to help me out. But I have been a mighty fine cleaner in my day. Trained by having to clean hotel rooms. Bathrooms in 5 to 10 minutes, everything must be polished and there can be absolutely NO hair or dust ANYWHERE. Even the bathtub and sink must be dried out. And the TP folded! Yeah, row-boats and 10 minute bathrooms, that is my claim to fame. Of course, keep in mind some of the cleaning competition at camp was not only 18 or 19, but also half of them were MALE and 18 or 19. They didn't stand a chance.

Anyway, the next week Dan presented me with a HUGE jug of Mr. Clean, just for me, and a sort of apology. (Which I'm not sure I entirely deserved) He told me "When Karen says it's clean, it looks clean, it smells clean, and it IS clean." I think from then on I was sort of an adopted daughter. He was a great man.

So, one thing Dan taught me about the ocean was the word "Iconocaucusgrandulocious." You say that like it is spelled. He said that though he's taught beach studies for years, invariably some one will bring him a something that he has never seen before and has no clue what it is. In which case you promptly tell them it is an iconocaucusgrandulocious and very rare indeed. Dan was right. You can live on the ocean for years and years and still find strange new wonders.

For all the great stuff about the ocean, it is absolutely frigid. (The Northern Pacific, anyway) I would wear a life jacket whenever swimming, not because I was afraid of drowning, but because otherwise it was too cold to last more than 2 minutes. You'd just jump in the swimming area, stay in at max. about 10 minutes and then get out and warm up. Because otherwise you really could get hypothermia. Seriously.

The kind of cold that makes you feel like you can not breathe. And it doesn't matter that you are jumping in with this knowledge. You prepare yourself for the cold. You brace yourself. But when you jump in, for a few seconds you really can't breathe. Then you sort of acclimatize (read get so cold on the outside that you are numb) and it's not quite so overwhelming.

And that is what I am talking about (in an unusually round about way). The way my life with Joel makes me think about taking a spill into the ocean from a kayak or canoe. (The only way to tip one of the yellow bathtub boats was gross incompetence) One moment paddling along nicely. The nice moment - DUNK! Into the shocking frigid ice knife cold. Thing is, just like when I tried to do a wet exit or when I jumped in on purpose, knowing it will happen is absolutely no preparation for it.

And even though the changes of life for Joel are not usually as instantaneous as an ocean dunking, they still seem as shocking.

So I brace myself for the next change. I remain aware that at any time Joel could: have a prolonged seizure and need 911, suffer from adrenal insufficiency, develop a more serious liver problem, or even a life threatening bleed, aspirate and develop a fast-acting pneumonia, lose his hearing, break a bone.... does the list seem endless to you?? Because it sure does to me. So though I try not to panic when ever there is one of his innumerable fevers, or he is unusually fussy, there is always an icy thread of undercurrent there.

And every time something like this happens for real, even if it's something not quite as serious - DUNK. An icy coldness, knife-stabbing, I-can't-breathe panicky-ness. It's not really a physical feeling (usually). It's the emotional equivalent to what I have described. The emotional reaction to a sudden change in temperature and circumstance. Emotional dunking.

I hate it. And just like the physical dunking, it doesn't matter how many times it happens, or how much I prepare mentally, it still would take my breath away, so to with this emotional dunking. Physically, in a few minutes I'd be ok. I'd get my bearings, relax, and trust my life jacket to get me through. I'd start to breathe again.

And emotionally, I'm wearing a life jacket too. I'm not going to drowned, or freeze to death. It's just those first few "moments" (days, maybe months?) while I get my bearings. That life jacket is there, keeping me afloat, and staving off hypothermia, all the time. It is just the perceptions while I catch back my breath. It's the first response of panicky-I CAN'T BREATHE- edness that I hate so much.

The time it takes to realize each and every time it happens that I'm going to survive and be ok. That I'll get my breath back. That, no, there isn't anything I have to DO. I just have to trust. Because every nerve in me is screaming that I should DO SOMETHING. It takes a bit of time for that first reaction to slow as I re-remember time and again that there is nothing I can do. Just relax and breathe. Let the life-jacket do the rest.

Until it's time to upright the vessel and climb in. Get underway on the journey again.

I'm so grateful to have a life-jacket. And I know that in the end, no permanent harm done, I might even be stronger, or more importantly, more compassionate. But oh. Oh. OH. I HATE the dunkings!