Hospital Madness

I don't even know how to describe my emotional state right now. Let's just say it's a negative one. And I feel like if I don't get rid of some of the build-up, I'll either explode, or sink to the bottom of the ocean under it's weight.

I can't believe how hard this hospital stay has been. I thought it would be much easier, especially at the start when I was so relieved that Joel was doing so well. But I hate, hate, hate the hospital. I mean, I love it, I love the good nurses and kind doctors and that my boy gets medical help. But I hate it, I loathe it, and I can't stand it. You know?

I've got one nerve left, and everyone has been standing on it. At times I have been almost cranky with the nurses, and I'm not usually like that. I haven't been liking some of the nurses and doctors, and I'm really not usually like that either. I've just been ready to give someone an earful, and lucky as you are, seems you're going to be that person. In fact, it's been so bad that I have resorted to the extremely junvenile tactic of waiting tell the nurse is gone and then saying really sarcastic and rude things, even making faces. Thank goodness I have at least waited until I was alone.

It is a good hospital. Generally they are very kind and careful with my son. I do feel that for the most part he gets good care there.

Part of it is losing two good weeks sitting in limbo. Part of it is the pain of leaving Joel at 4:30 when Steve comes to pick me up. Leaving him and knowing he'll just lie there bored and alone until bedtime. It hurts.

Then there are all the horrible associations of the hospital. I don't know why. I don't know why. It just feels like death is slowly creeping down the halls while I sit there. Not the suddenly startling recognition kind of death. The kind that leaves dust and cobwebs on your heart. The kind you see coming a long way off, but you are too tired and leaden to move. The kind that turns everything grey and dingy as he slithers past hissing that he'll be bbbackkkkkk. I just want to hold Joel and sob, but I don't want to do that in front of the docs and nurses.

So every little thing is like a joy buzzer to my frayed nerves and raw heart. When the Joel gets poked for blood instead of drawn from his pic line. AND THERE IS A CARD THAT SAYS BLOOD DRAWS ARE OK. Yes. A card. I saw it. But maybe that nurse was a bit, um... not wanting the hassle to work it out for me. And the doc on call isn't crazy about using it, in case that ruins the line. And all I want is for people to bend over backwards to make things as easy and nice as possible.

Like disconnecting his pic line and disconnecting the monitor when it's not in use. Glass dust rubbed into my eyeballs, people!! Even though it's a pic line, and even though I ask to be disconnected between meds, some nurses are keeping the fluids running. Meantime, we are peeing like a racehorse (me in sympathy ;) ). It's hard enough to lift him and hold him without all the wires and tubes. Today, I almost disconnected him myself... Wait, I actually did disconnect him from the monitor and when the nurse came in cause it was beeping, I said "We don't need the monitor and we want to be disconnect. We are going to be free."

Then there is the neurologist (yeah, my regular neurologist is away on vacation, of all the nerve) who keeps threatening, I mean, offering to hook Joel up for an EEG. Because Joel is still having some seizure activity. And no matter how many times I tell someone, still, still, still, it is being mistaken for other things when I am not there. (They ARE hard to recognize) And when I am there and point them out, it is to no purpose, as the only result is that the neurologist comes back to thre-- I mean offer an EEG.

And no, he doesn't want to see the one from the sleep study two weeks ago. No, it doesn't matter that they hooked up extra electrodes, it won't be as good of a picture as the EEG he would do. He just wants to get a better picture, make sure they are seizures, and see which parts are seizures, or if the choking is a by-product. AAAAAAAGGGGGGGGGH. aaaaaaagggh. agh. sigh. COME BACK SOON, DR. BOOTH.

Because even if I have to get violent, I'm surely not letting them hook him up like that again, the very thing that got us started here in the first place. WHEN THERE ALREADY. IS. AN. EEG.

Then the probiotics I left can't seem to get into Joel twice a day, like I asked. I got so snarky with a nurse, I said "Hmmmm. Well, I PAID for them and brought them in, so could you please bring them to me RIGHT NOW and I'll give them to him myself." And I never say stuff that way. (well, not to anyone who is not married to me, or a product of my womb, anyway.)

And this morning there was a second pressure sore from someone strapping the CPAP machine too tightly to his head, just overlapping where the last red mark hadn't yet faded. And I wanted to say (but thankfully DIDN'T) "Could they NOT SEE the LAST mark?? Did that NOT give them a CLUE that they shouldn't tighten it too much??!!)

Of course, all of these things just make me feel worse for not being there. If I were there, then I could troubleshoot a lot of this stuff... I feel like it's partly my fault that Joel's not as comfy as he could be, and, well, in some ways for sure it is. Because I know he'd be more comfy with me there to love him and keep him company. And it is so hard to leave him there every day. So, so, so hard. But all you can see of that is the grouchiness, the "I'll bite your head off if you don't start trying a bit harder to make this as pleasant as possible" attitude.

But really, my heart is broken to leave him there. Really, I just hear a clock ticking away the seconds of his life. Really, I'm terrified of all the other days I'll spend in that building just watching my baby suffer, and being there is a reminder of all of those horrible things coming up.

So. There's only two more sleeps left. Tonight and tomorrow. Then, as long as nothing else goes wrong, I finally get to bring my boy home. It feels like a lifetime has passed. I can't wait. I just want you home, sweet little boy. I miss you.

Lies I've Told My Son

Last night Caeden woke up from nightmares. Apparently there were spiders, lots of spiders, crawling all over him. They were invisible when Steve and I came in to look, but they had been there, all the same.

We tucked him back in twice before it "took." Each time we came back in, he assured us they had come back and he could feel them crawling on him.

So I rubbed a little baby lotion on him and told him that spiders hate the smell of baby lotion. I told him that mommy and daddy's love filled up his whole room and protected him from bad things. Nothing could get him in his room, because we had filled it all up with our love. I told him that God watched over him at night, and that God was so powerful, he didn't have to be afraid of anything, God would make sure he was ok.

And I wondered while I said these things: Am I lying to my son?

I guess it would be more accurate to say, "Am I deceiving my son?" I'm still not sure. On the basic level of invisible crawly spiders, monsters and bogey men, no. I told the truth, straight up. He is protected from those things by the security of our love, from knowing that we are in the next room and rush in to him at the smallest sound of alarm. And yeah, God is more than powerful enough to take care of bogey men both imaginary and real.

Still, I wonder, is that really the question that a nightmare is asking? Or is it a more general question, a question born out of the growing realization of children that yes, bad things can happen. A niggling fear that the world is not as safe as one might hope. The discovery that no, a kiss really won't make the boo boo better (as Caeden is now smart enough to tell us), and even a band-aid is, well... a band-aid solution. Is the question of his nightmare more about fear of the real misfortunes of life, and less about pretend monsters under his bed?

Maybe you think I'm over thinking. Maybe I am. But don't the nightmares come more often when there is some sort of upset in the house? The weeks that Joel is in hospital, maybe? I don't know. But it seems to me that nightmares are more than indigestion. I heard an uncertainty about life in general, in that confidence of the existence of invisible spiders. A question was raised to me.

So maybe on that most basic level of my answer, there was no deception. The one that was immediately concerned with childish anxiety. But on the second, more broad level, of course there was deception. His room IS filled with the love of his mother and father, the whole house is filled with that. But it will not keep him safe from a house fire. It is no guarantee that bad men will not break in and hurt us. It can not keep his brother from being sick and dying, so how can it keep him safe? In truth, his parents are not the powerful figures of childhood legend.

That truth could not be said, though. That truth is one that little boys do best to realize slowly, as they mature into adults, and not suddenly in the midst of a dark, spider-filled night. As honest as I am with Caeden, there are truths that must go gently, gently.

And I don't feel too guilty about it, though that part of the deception does bother me. It does make me feel a bit helpless. There is nothing I'd rather do more than be able to protect my son like Superman. To be able to shield him from bullets, and cure his illnesses with the palm of my hand, and carry him unscathed wrapped in my arms, or in my cape from the midst of a fire. So I feel a pang at my own inadequacy when I tell him he is protected by my love. It seems so little in such a cruel world. Walls of paper to protect him from wind, rain, animals...

Of course, there is a third level yet to this whole question. A level where the truth is found again in my words. Because this house filled with our love is a protection, just not a physical one. It is a safe place for a little boy to grow up to be a brave and honourable man. Our love will help him find the confidence to stand for what is right. The love here will give him strength to face evil days. He will be resilient. This love will help him, not by keeping him from harm, but by making him strong enough to survive it.

That part goes for what I said about God too. God will protect my son. That protection might not keep all physical or emotional pain from him. Rather, like our love, God's hand will guide him in truth and keep him on the path of wisdom. God will make sure that the misfortunes that come to him will grow him, not harm him. He really doesn't have to be afraid of anything, if he puts his trust in God, in the end he will find he has passed safely out of this life and into the next. Where those hands that guided him in this life will reach out to embrace him.

Tuning Fork

I was very happy that Joel as able to get a pic line in today. I don't know how to spell it, but that is how you say it. A pick line is a better alternative to an IV line, if you are thinking long term. And two weeks of IV antibiotics is long term enough for me, so I was very glad that Joel was completely co-operative and actually made the job easy for the pic line team.

Now that we have the pic line in, we don't need to be constantly connected to a saline drip. The pic line will not close down the way an IV can/will over time, so we can be disconnected most of the day and we will only need to be in our room for meals or meds. In other words: Ronald McDonald Family Room, here we come! Tomorrow I'm bringing a patch of memory foam and a blanket and if Joel is feeling up to it, we will lie on the floor and play away in the children's play area or the family room. And go for a ride in the stroller. Aaaah. The freedom!

The other nice thing about the pic line is that they no longer have to poke him to get a blood sample. Most blood samples can be drawn from his pic line. That is so nice, because he looks like a pin cushion right now.

Plus the line is flexible so he can bend his arm! We don't have to worry that his vein's going to blow out and keep checking for a swollen hand. Can't wait to get that little hand free, actually. It's been plasticized for so long!


I think that Joel has given me a gift. I was thinking about this the other day. How having Joel part of my life has given me this internal "tuning fork." You know, like when you were in music class at school and the teacher struck that metal two pronged fork? And it vibrated and hummed at a certain pitch?


It's like when Joel came along, an internal tuning fork was struck with a note of sorrow, or sadness, or pain. And ever since, it has been humming inside of me, that note of sorrow. I feel it reverberating at all times, sometimes louder, stronger, sometimes quieter, softer. But it is always there. I suppose that doesn't seem like much of a gift, huh? And I admit, at first I wasn't that thankful about the continuous note of sadness vibrating there underneath every part of my life.

Well, it helps to know what a gift is for. And I have come to realize something. This note that is always thrumming in me is a gift that lets me hear the pitch of sadness or sorrow in someone else. It truly is a tuning fork. I listen to the note inside me, and as I go about my life, I hear that pitch in other people. It's like the fork inside of me starts reverberating harder, louder, in sympathy with the vibrations it picks up from other people. It's perfectly tuned to sadness, pain, and sorrow. It surprises me how often now I pick up this note, how many sad people there really are in the world.

Not that someone can't hide their feelings from me, or fool me at times with a cheery face. I'm not saying I'm Super-Sensitive Woman, or anything. I don't travel at the speed of light and bullet's don't bounce off of me. But I sure am a lot better at picking up the emotional vibrations of sadness. And my own instrument sings inside of me, at the note it hears from others.

Maybe that still doesn't sound like much of a gift. But it is. It's not a super power, but it is a good thing, this ability. It helps me not feel so alone, I suppose. It gives me a feeling of purpose, because I get a chance to love on someone else who is hurting. It just is a good thing.

I think I have said this before, in fact, I know I have, but I'm going to say it again. I'm not afraid of sadness. I'm not afraid of sorrow. There are feelings that I fear. I fear what I will do or say in anger, of the holes I could make in other people, of the way I could rip something precious and not be able to fix it. I fear depression. I fear the way it can paralyze you and the apathy that can rob you of purpose or meaning. I fear self-pity. I fear the way it wraps you up in a long winding cocoon of cotton batting, the way you can see and feel nothing that is not me, me, me. These things I have a healthy fear of, for the way they can swallow you up and take over your life.

But I'm not afraid of sorrow or sadness, though they are not much fun, I admit. Sorrow is a strange element. You can feel sad and happy at the same time. Example: the graduation of your youngest child. Sorrow will form a bond with joy. You can laugh and cry at the same time.

Not so with anger, resentment, self-pity. They will not bond with happiness. You will not feel peace and anger at the same time. If you manage to feel joy and self-pity at the same moment, you will find that the self-pity has so twisted the the joy that it is actually sickening. The fierce exultation you feel that you "really have it that bad" will turn your stomach. You can not feel both resentment and contentment at the same time. At least, I have never been able to manage these feats.

I have felt sorrow and peace though. A calm assurance through it all, that all will be well, while tears flowed. I have laughed and cried at a memory so precious that my heart breaks. I have even felt content while mourning a loss, though that one is, I think, the hardest to do. But I have felt content with how good things are with my sweet boy, even when mourning the loss of eyesight, or mobility.

When wounds are fresh, I admit, they are so sharp they press out all other feelings. Strong pain is over whelming, and I know I shall be overwhelmed, completely overwhelmed one day. Pain will drowned out all other voices, it will be all I can see. One long, pounding dissonance sounding in my heart.

But it will not remain this way forever. In time, it will lessen. It will fade into sorrow. And other feelings will grow up in between. Peace. Contentment. Happiness. Joy. And of course, love. Even the sharpest of pains, I think, can not drowned that one out.

The note of sadness struck inside of me will harmonize with these emotions. And I will be able, thanks to Joel, to hear the song of sadness in other people. I will be able to sing along with them. And even sad songs are beautiful, and no one should have to sing alone.

Hospital

It seems there truly is no way to get out of two weeks of treatment for meningitis. Today I started to feel badly for being so hard on the doctors about it all. Those poor doctors, they just can't win! Back in the spring, we were upset with them for not doing more to help Joel. Now we are annoyed at them for doing too much, being too careful! As much as I wanted Joel to come home so badly, I do understand that they must take every precaution, so I'm learning to live with another prolonged hospital stay.

It's hard though. Today he was ever so sweet, lying there and babbling to Steve and I, content and smiling. I just wanted to scoop him up in my arms and never let him go. And of course, even night and every morning that empty crib is a grim future, the bars on the crib like the grimace of an empty skull with the life inside absent... a sad way to wake up, no?

And did I mention that it turns out that yes, Joel DID sustain a fracture, if you remember back a few blogs where I was sharing about my anxieties about his fragility. And about how he started to cry one night when he moved wrong somehow? Well, he does have a fracture, and it must be slightly worse than the one he had on the other side, based on the fact that this time they gave him a little half cast. I forget the correct name for it. It is, literally, half a cast, with his arm wrapped into it, so it actually looks pretty comfy. And I feel much better now, when I have to lift him or move him. It really did seem he was in discomfort quite a bit from being lifted or moved too much.

We are upping his vit. D and adding a bit of calcium to his "diet." We'll see if that helps.

So far, no one has noticed any night time seizures in the hospital. Which means he for sure hasn't had any bouts lasting more than an hour, as they check him about every hour. Maybe, maybe, when I take him home, it will be without the night time seizures acting up. Here's hoping.

I have always loved to people watch, and hospitals are also a great place to do that, though of course the mall or the airport are a lot more fun, and have a lot less sadness. You will see all sorts of faces. Faces absolutely fascinate me.

There are long faces and round faces. There are large noses, snub noses, noses with a "roman" bump. Chins that are square. Chins that recede. Double chins. Tiny ears and elephant ears and funny-looking ears with weird lobes or squiggles. Close-set eyes, big eyes, wide-spaced eyes. Heavy eyebrows and no eyebrows and everything in the middle, even uni-brows. Moles, freckles, wrinkles, laugh lines, scars, you name it.

But every one has one thing in common. Every single face has two beautiful eyes. Really. If you stop looking at eyebrows and eyelashes and spacing and eye make-up or whatever, and just look into the pupils, surrounding by the beautiful crystal of the iris, you will see. Eyes are really beautiful. I have never seen any that weren't.

And the beautiful eyes, set in a unique face, all have a story, and no where will you find so many stories as sitting in a hospital and watching the people go by. You should try it sometime. Just go to the cafeteria, or find a bench in a busy hallway by admitting somewhere and just watch the people go by. It is fascinating, and it is also often sad, for of course, hospital stories can be so.

One day while I walked down the halls, I heard them call a code blue in the children's play area of Cancer Care. I stood to the side as running steps welled up behind me and a flying figure passed me, not once but several times. And I almost cried, right there in the hallway, for I thought "Somewhere there, in the play area I've sat in with Joel, somewhere there is a parent who is having a very bad day."

A couple days ago I rode down the elevator with a woman in tears as she spoke to her friends about when the autopsy would be done so she could have her baby back. I cried then, too, silently. Her little boy had been on the same floor as Joel, I looked at the "Thank-you" plaque later on. He was only a year old.

Today, there was a couple in the Ronald McDonald family room who were sharing their story. Their son had been in the hospital for ten years. He had been born with Cerebral Palsy. Then there was a bus accident on the way home from school, where he hadn't been strapped in properly, which led to a damaged neck. Later, there was an additional problem with how his neck had been immobilized, somehow screws had come out. In the end, this child had ended up with a permanent trach and ventilator, paralysed from the neck down, but still able to smile at them. And twice a day while they changed his trach tube, he could say Momma, or Daddy. His parents spoke of him with love and pride.

And that story hit home to me, more than ever, how every where you go, someone has a sad story, and often it's even sadder than your own. It's really good to remember to walk around and really look people in the eye. Sometimes the stories there will surprise you. One thing I know, from my own experience: It feels good to have someone SEE you. Not just see you. I mean SEE you. Look into your eyes and acknowledge, even for a moment, that you are a fellow human being, with a story of your own. A story worth hearing.

Sometimes I wonder if we should train ourselves in a true "higher education." Perhaps we should all have to pass a course on being empathetic, or, for lack of a better word: humane. If I taught that course, I'd make every pupil sit for a few hours in a busy hospital and watch the stories, and really see the people who carry them, in their eyes.

Friends

Today ended in a big disappointment. Joel has been in hospital ever since the last blog I wrote, but I really thought he'd be coming home tomorrow. Turns out I was wrong...

He's looking really good and doing really good, and I'm still not sure why he was looking as bad as he did on Friday, but I still think it was connected to the stress of the sleep study. Thing is, when we brought him into emerg, one of the docs thought Joel's neck seemed stiff. Then heard that Joel had a temperature that morning. And thought "Meningitis." Which is (oh my favorite word) reasonable. Though Joel did NOT have a fever when we brought him in, and was actually already doing much better. In fact, he was completely off oxygen by the time he was admitted.

The problem was, his clotting factor was too high for them to do a lumbar puncture, with is the only way to rule out meningitis. So they started potent antibiotics, just in case. Little did I foresee the outcome this would have... (of course, they didn't warn me that these were IV antibiotics which Joel would likely HAVE to finish unless they could rule out the meningitis).

I'm pretty sure there is no way a kid with a PBD like Joel could sprout a fever and stiff neck from meningitis and then lose the fever and look better, even BEFORE the antibiotics, so I'm really sure it was NOT meningitis, never mind that he was absolutely seizure free for the 16 hours before admission and that would be pretty amazing for a case of meningitis in a kid whose seizures haven't even been controlled with meds.

Nevertheless, we have started something and unless there is some proof that Joel did not have this illness, we will be stuck in hospital for two weeks on a course of IV antibiotics and this rips my gut out. I can tolerate Joel in the hospital when he's not feeling well, in part because he usually just sleeps. He sleeps and is totally oblivious of my presence, or lack thereof. But the thought of leaving him there for the evening and night, alert and aware and bored and lonely, UGH! Not to mention that I worry a bit, because at home he gets held upright at times during the day, moved around and patted and such. I worry about him just lying there at the hospital, when I'd be holding him pretty much all evening at home.

So it was a really big disappointment for me.

But here is something that is NOT disappointing. I have the best group of friends EVER.

I have been praying for some good, close friends for a few years now. Even Pre-Joel. Maybe that sounds pretty pitiful, needing to pray for friends, like you can't make em on your own. Well, so be it. It's the truth.

I had been waaaaaay up north, and then got married up there, and then returned to the city. After four years away, friends had moved away physically and even more had grown apart figuratively. They got married, made new friends, had new interests. The large pool of friends I once had was severely diminished. And I really missed having a few really good, really close friends.

So I prayed for some. And met some good people here and there. But no Best Friend types. I was still feeling lonely, and still wishing for some girls to hang out with. It seemed to take God a long time.

But finally, a year ago, Steve and I started going to this really amazing little church. I've mentioned it before, and how tiny it is. It's also full of really warm and caring people, people who continue to amaze me the way Jesus' love just flows out of them. These people have taken Steve and I in, as if they had always known us, as if we were old friends and no need to stand on ceremony here.

And as much as I can not believe it, there is a group of terrific ladies who are my friends and who are there to watch my back whenever things go nuts with Joel. I keep waiting for them to start backing out, one by one. I thought this time, with a two week stretch ahead, they surely would. I can't believe no one has said "Sorry, I can't watch Caeden anymore, I have five kids and one of them is just a newborn, can someone else do it?" (Yes, one of my friends has five kids, one of whom is just a month or two old, and yes, she STILL takes a turn watching Caeden) I can't believe people still offer rides, or meals, or babysit. I'd have thought by now the statute of limitations on kindness would have come into effect.

And I really don't know what I would have done last spring, or what I would do right now if it wasn't for them. I'm pretty sure we'd never have been able to do it.

It seems God brought these friends into my life just at the right time, when I needed them most. Not just to babysit, or help out in practical ways. These friends listen and laugh with me. They encourage me on my journey and help me keep closer to God. They are a wonderful answer to prayer.

Of course, they are not just friends, they are family too.

So here is a huge, HUGE thank you to all my brothers and sisters at Faith Community Church. Thanks for caring, for praying, for listening, for babysitting, for playing with my boy, for loving my family, for supper, for beans and beet pickles, for rides, for coming to birthday parties and taking us out. Thanks for being there, the body of Christ, in the flesh.

Sleep Study Update, or Not as Much Fun as a Trip to the Dentist

So last night we did something I have been dreading for a couple of weeks now. We went in, Joel and I, and had our sleep study. And funny thing is, it was as bad as I thought, but in a completely different way. Neither of us have recovered, but I'm hoping we soon will. I thought I'd write about what happened in the meantime.

One of the many anxieties I had about the study was the fact that Joel was waking up in the middle of the night and having a few seizures, sometimes a heap of seizures. It didn't seem ideal for a good sleep study, and I was pretty concerned about what the sleep study techs would do if Joel was having seizures for a couple of hours. As in, would they panic, be really stressed out, or phone a bunch of people to rush down and "do something?"

So when he was still having hefty doses of night time seizures the night before, I phoned the sleep lab and I phoned my neurologist. Which was, on the whole, a pretty good strategy, I think. The sleep lab said it would be good to get the seizures caught & recorded. My neurologist spoke to the tech on duty last night and filled her in on the Joel "basics" (so I didn't have too, how nice!). She was all gung ho about the study as a chance to capture the seizure activity as well, so it was all a big go ahead. I thought it might not be too bad after all.

Then we made our first sleep study mistake. We hooked Joel up to all his probes, and there were a lot of them. When Joel is himself, I don't think he'd mind too much. He truly is very laid back when he's feeling well and when I'm around in a strange situation, he usually deals pretty well with it. But yesterday was NOT a good kind of day for him. The last couple days he's been back in "unhappy" mode, and very irritable and touchy.

I thought it would be best to just hook up all the probes and be done with it. I was worried that if we let him fall asleep and then tried to put em on, he'd wake up from it and get really upset. (which he might have done, to be fair to me). But he was really, really upset being awake and WANTING to sleep while they were hooking him up. We let him get much, much, much too upset. More upset than I'd normally let him get at home...

And by the time we were done, he took a long, long time to settle and go to sleep. And his O2 sats were way down, and didn't go back up. I mean, they were the lowest I've ever seen em exception of a bad seizure only and for the longest period ever. They stayed low after we put him on oxygen. And after we moved from 1l. to 2l. And after we tried the CPAP. And added O2 to the CPAP on his normal 1l. prescription. So we bumped it up. Finally his O2 levels started to come up, but very, very slowly. My favorite respirologist (I'm going to call him Dr. Smiley, because that is how I think of him. His real name is Dr. Alsimali, which I have no idea how to spell, and I actually haven't seen him smile too often. But he is so warm and caring, so he's Dr. Smiley to me) was on call last night and he bumped Joel up to 8l of O2, because he said it was taking too long for his sats to go up and it wasn't good for him. So finally, finally his O2 level came up to a normal level, though even at 8l. it took a crazy amount of time. (Like 10 or 15 mins. instead of the usual INSTANTLY)

It was a pretty sucky way to start a sleep study. I'm not sure the exact time, but I think it was about 11pm by the time it all got sorted, and already I felt I'd had enough stress and excitement to last for the rest of the sleep study.

This had NEVER happened to Joel before, though like I said, I try really hard to never let Joel get too upset for exactly the reason that I'm afraid his heart will beat out of his chest, he'll burst a blood vessel, or have a dooozy of a seizure or something. Mommy intuition says "Complete meltdown = not good."

The middle of the sleep study is probably the only good thing that came out of it all. Well, something besides the confirmation that complete meltdown = not good. I don't know what time it was that I finally fell asleep, but I know it was just before 2:30am that I woke up thinking Joel was now awake and knowing the signs that he was about to start up his seizure activities. I looked him over, sure enough, eyes open, exhaling through mouth, and even making very tiny, slight sounds. Imagine my complete surprise when the tech (spelt Guiliana?? but said Juliana) assured me that Joel was STILL SLEEPING. I must have asked her the whole variety of "Are you sure? Is he still sleeping now? So even right now he is still sleeping?" until she wanted to pull her degree off the wall and shove it in my face, but each time, yes, he was still technically sleeping. Though she said it was a much "lighter" phase of sleep.

And even though he started to have a series of seizures, she told me he remained asleep through the whole sleep study, right until morning. So, now I know several important things about that. 1. It is ok to leave him on CPAP during the seizures as long as his O2 is good.
2. He is perhaps not distressed because he is not even awake and aware of what is happening.
3. If he's ok on CPAP for O2, and he's not distressed, not even AWAKE, perhaps it is ok for me to try and go back to sleep, or at least lie there dozing and not get out of bed and pick him up.
Which is sort of good and useful knowledge to have.

Strange thing, which I'll have to ask the neurologist about, is that he doesn't enter that "light" state of sleep unless a seizure is going to happen.

Back to the Horror Show Sleep Study. So, I still couldn't sleep after I woke up and heard him having his seizures and etc, so I got up and went to read a book for awhile, just asking them to get me if he did wake up. By 4am I thought it might be safe to go back to sleep and he did seem to have finished the seizures.

Again, not sure what time I fell back to sleep, but of course I was awakened just before 6am so they could remove the probes. Only to discover that Joel had a fever (39.5) and that he was now breathing pretty heavy, though his sats were ok. GREAT!

The tech (I'm just going to call her Julie!) asked me if I wanted her to call Dr. Smiley to get Joel into the ER and I briefly contemplated it before chucking the idea out the window. His lungs were good last night at 11pm when they checked him, and I know that the combo of seizures, and dehydration due to all the crying and unhappiness last night could have easily brought on the fever, not to mention Joel gets "safe" fevers all the time. But his breathing made me a bit uneasy. Still, we go to the ER unless I really think we need to. You are there forever. Like the Hotel California, and do I need to say more??

So we've come home, and Joel's fever is down. I got him on O2 because his breathing is so heavy and his heart rate is a bit high, considering he is asleep. I'm really hoping that after he rests and recovers from his sleep study torture, I mean, experience, he'll relax and breath easier. If doing the sleep study has upset the fragile equilibrium we maintain, and sends us to the emerg, then it really wasn't worth it.

And I know one thing. I'm not doing another one. So I hope they don't try and tell me that the fever indicates that Joel was sick and therefore we need another one. I'm hoping that since we ended up using the CPAP, they are not going to say that the study is now in the "therapeutic" category, not the "diagnostic" (because Dr. Smiley had the decency to warn me that even though we needed to do it, it technically shifted the study) and now we need to do another sleep study.

I'm not putting Joel through that to prove to them (the heads of the department, not Dr. Smiley) something that I already know: the CPAP has been helpful to Joel. I really HATE putting him through that sort of stuff, because it seems to take a much greater toll on him then all that medical stuff takes out of a healthy child. Julie said that if we did another sleep study, we'd let Joel get to sleep first and then hook him up. That might work better, it might not. But I'm loathe to put it to the test.

On a side note: I thought that Julie must really think I was a pretty horrid mom. Let's just say that my personality is NOT at it's best when I'm stressed out and dealing with some medical procedure. I get all stiff, awkward, and jerky when they ask me what they think are simple questions about Joel, and my explanation is full of sighs, rambling, lengthy and maybe even confusing. My attempts to lighten the mood with humor fall flat and just seem stupid. Yeah, I don't suppose I'd get a Miss Congeniality on a night like last night. And then there is me NOT taking Joel to emerg, plus giving him a dose of morphine in the morning with a guilty and rambly explanation that I think the car seat is stressful and maybe even painful and I just don't want to risk him having a meltdown like last night on the drive home. So, not exactly making a good impression. (In my experience, giving Joel morphine never leaves a good impression)

But she completely surprises me as I am about to leave. She comes to shake my hand and "I can't believe I didn't even get your name until now." Then she says if we end up back in hospital later today or any other time, call the sleep lab and we'll go out to coffee. She says she'd be happy to take me out for a break sometime if I'm in the hospital and needing to get away for a bit and chat. I suppose it might seem odd or strange in the light of what we normally consider "professional" in this setting. I just thought it was really nice, a caring sort of thing to do. I'm glad she dropped her distance for a minute to take the time to reach out. I might even take her up on that offer...

Children

A while back, I think it was in June, I wrote a blog called "Angel." It was about how Joel had taught me so much...

I've written about a few things that Joel has taught me, and here is another one. I suppose it is along a similar vein as the others, but something a bit new, too. Previously I've mentioned how Joel has helped me understand the value of being human. What really counts. That sort of thing.This is along the same lines, but a bit of a different perspective.

Before I had children, when I thought of God as a father, I could relate to that through my experience with my own father. After having children of my own, that picture of God as my father deepened and was enriched through my experiences with my own children. I learned a lot about unconditional love. About what it means when the Bible says God has compassion on us like a father does his children.

Joel has brought me an even deep and more detailed picture. For I have two sons. One of my sons is the "superstar" of the house. He does and says a lot of cute things. For example, yesterday he was playing with a box (best toy ever!). He got inside and told me he was a caterpillar and the box was his "crystal." Then he came out as a butterfly.

It is easy to brag on him. He is (are you surprised a mom is saying this??) so smart and funny and personable. He seems to have enough personality, enthusiasm and bounce for 5 children. I have his art work up on my fridge, the construction vehicles he cut out for himself with a pair of scissors and glued up. Only thing I did was cut out the wheels. And he is only 3 and a half!

Sure, I love him unconditionally, but also there is a lot riding on him. I'm counting on him to help around the house as he gets older. To marry and give me grandkids. To help take care of his dad and me when I get older. To make something out of his life and make me proud. It's easy to see that what I "invest" in him will pay off.

Then there is my other son. I sure love him too. But he costs me a lot. I'm the one doing most of the giving. Sure, there are good times when his smile lights up my life. But there are lots of bad days. Where I get nothing back for all I put in. It's hard to really brag on him, though I am proud of him in my own way. It's just that he doesn't really do anything new. I got to show off his new teeth, and that was great, but generally there is a gaping lack of achievement. And his role in the future is going to be limited to the memories he's given me. And not all of them good ones.

And you know, for all that, I love both my boys with the same amount of love. The expectations are different. The future is different. What I get out of it is different. What I can brag about is different. But the love is the same, overwhelming and unconditional.

Which taught me something. I have always been a bit uncomfortable with two somewhat paradoxical truths. Knowing that God loves me and values me. And knowing that I really bring nothing to the table for Him. That I cost Him something pretty huge.

It was hard for me to understand how God could love me and find me so valuable and important when I had not to much to offer back, other than love. It was humbling to be sure. And sometimes it sort of... chafed? How could someone insignificant be significant???

But holding Joel in my arms, I could understand it with my heart. Joel can't "pay me back" for anything I do for him. I am proud of him, in my own way, but there is really nothing, if I am honest, that amounts to any great achievement or success. My relationship with Joel is largely me giving and him taking. There is no physical good he can do me. In fact, he has likely cost me something in terms of my own health, through lack of sleep, and the difficulty in getting exercise, stress, etc. And he doesn't mesh with my on an intellectual level either. Emotionally, well, his love is invaluable to me, but in the long run the amount of pain and sorrow will pretty much cancel out the times of positive feelings I have, if we put positive and negative feelings on a scale and weighed them out. The only thing he brings to the table is his love for me, which is still an immature and "baby" kind of love. And the only reason that has value to me is BECAUSE I ALREADY LOVE HIM.

And yet, despite the pain, the cost, and the lack of return on my "investment," I love Joel with every single beat of my heart. I'd never give him up. I'd never trade him in for another "perfect" child.

And though intellectually I function miles above him, and though physically my abilities and "powers" place him in a position of utter dependence, though he has cost me so much, there is none of that in our relationship. No "if you do this, then I'll do this." No "look, you really owe me big time so walk on eggshells and cringe around me." No "You are so far beneath me, keep that in mind!"

Yet, he's never going to understand me. I am "beyond" him.

But all I want to do is keep him close and love him. With no distance between us. And all I want from him is his love, even as simple and ego-centric as it is, for surely his attachment to me is directly related to all I have done for him, and for the safe and warm feeling he has around me. It is based on gratitude, on familiarity, and comfort. And that is enough for me.

I understand so much better now, the way that God loves me. To be sure He wants me to "make Him proud" by being the person I was meant to be. To be sure, He wishes me to learn to love with a more mature sort of love. To be grateful and to worship Him. He even has some tasks or "chores" if you will, that He might ask me to do.

But His love is unconditional. No matter how little I bring to the table in and of myself. And there is no distance there. It sounds incredible if you think about it. How an all powerful and all knowing being would love us like that. But I can understand it with my heart, because despite the difference in abilities between Joel and I, there is no distance there either. He's just right there in my arms and in my heart, close, close, close, which is what I really want.

And as the Bible says, if we humans, containing evil in our very nature, can love our own children as we do, how much better can God, who is perfect, love us? I'm not capable of a better kind of love than God, He will always out love me.

I'm not the "superstar" child. I'm not sure how much, if anything, I really give God to "brag on." But I am sure of this. He loves me without reservation, unconditionally and even intimately. His biggest desire is for me to allow Him to hold me in His arms, close, close, close.

Sacrifice

(Before I really start, here is a little note for my MiL, who is likely really worried due to my last blog about Joel. And anyone else whose still wondering. Joel's arm still appears fine. He was mostly happy today, with one fussy period. So don't worry too much. It's all status quo around here. And now on to the blog.)

Sacrifice: noun voluntary relinquishing of something valued; thing thus relinquished; loss entailed; slaughter of animal, or person, or surrender of possession, as offering to deity; animal, person, or thing thus offered.
verb give up; to devote to; offer or kill as sacrifice.

Yup. Sacrifice. A serious sort of word. A serious sort of concept.

Dare I say this? Joel is a sacrifice I make everyday to God. Don't be offended before you hear what I say.

I don't mean that I'm "slaughtering" Joel as an offering to God, or that I'm "allowing" Him to take Joel as some sort of means to garner His approval. Not at all. I've said it many times, if I could, I'd cure Joel in a flash. But I have no say in this particular matter. And God does not demand my suffering to "pay" for anything. He's already covered all debts and expenses Himself, and at a tremendous personal cost, I'd like to add.

I suppose in a way what I am sacrificing when I say that I sacrifice Joel is really my reactions to it all. I sacrifice my reactions. I already wrote about how it was a surrender. A surrender, and a sacrifice. I'm giving this whole thing over to You, God. All my tears, struggles, the sick feelings in the pit of my stomach, the aching loss and longing for a different future. It's something I'm giving to God, to let HIM use, instead of trying to deal with it on my own, or hold on to it angrily like a very shabby coat.

Let me explain it from a different angle. There is a verse in Hebrews that says "Therefore by Him (Jesus) let us continually offer the sacrifice of praise to God, that is, the fruit of our lips, giving thanks to His name."

In fact, it has been made into a song, "We bring the sacrifice of praise, into the house of the Lord..." A bright, chipper sort of song. To go with the praise idea, not the sacrifice part.

Not to say that a sacrifice made up of praise shouldn't be joyful. I mean, doesn't the concept of praise go hand in hand with joyful? Well, sometimes. We usually praise God very joyfully through music during a church service. That's one way to do it, and there is nothing wrong with that. Especially if you are thinking in terms of the verb, to devote to.

Even before Joel came along, that song made me think, though. Because sometimes praise is easy and flows out of our happy contented circumstances mixed with uplifting music, driven by the gratitude we naturally feel for all the good things we have. That is one kind of praise. It's really the most basic kind. It sure does have value, I mean, it's the sort of praise that is sort of owed in every way, no? If we don't manage at least this much, then are we not UNgrateful?

But praise is sometimes NOT easy. And it is not always a song. Praise can be SAID. Like when we extol someones virtues. When we go on and on about someone we admire. Bottom line, praise is saying (or singing) the things we admire about something/one, it is listing the good or especially the excellent.

So when I sing this song in church, I invariably think of how praise so often is truly a sacrifice. It costs something. Sometimes life is hard, and praising is hard too. Sometimes, as I know only too well myself, there is pain, anguish, loss, suffering. Praise then takes on a whole new meaning. Then that cheerful little song that we sometimes (dare I say this?) sing a bit glibly, or maybe just a bit comfortably takes on a different tune. It is sad. Almost dirge-like.

I suppose some might feel that praise offered with a heavy heart isn't just quite "there." It might be easy to feel that if your praise is coming from a sad and weary heart, it is merely hypocrisy, and not much of an offering to God.

I think that's a bit off. Here's my explanation. Sometimes Steve really shines as a husband. Sometimes there are extravagant gifts. Praise for my blog (yeah, I like that one). Gentleness when I'm tired or frustrated. At those times I feel overwhelmed with gratitude and love. "I love you" I say to Steve freely and with great emotion.

But sometimes it's a bit different. Sometimes Steve has struck out. (sorry, hon, am I being too candid? You know I know I strike out just as often) Let's just say I am less than pleased with him. And sometimes I say "I love you" through teeth that are slightly clenched, and a bit more like I'm reminding myself of something.

And you know what? That is when it counts most. Right? Real love isn't blowing dandelion fluff in a summer meadow. That's a commercial for fabric softener. Real love is a (sometimes grim) determination, more like the tough steel cables holding up a bridge, to stick by someone even when it's 20 below zero, the heat's off, and SOMEBODY LOST your coat.

And that is when praise really counts too. Even if you have to say it without a lot of enthusiasm ringing in your voice. Even if you are saying, like Job, "though He slay me, I will trust Him." I sincerely doubt Job was singing when he said that.

Sometimes my praise is said, not sung. It's the simple statement that even though I hurt deeply and profoundly, I still think God is good. I can even add "all the time." I still know that He loves me. I still know that life with Him in it is something so precious that I'd never give that up. God is amazing.

Even when I can't sing it, I have hope, maybe even confidence, that God finds my offering of praise beautiful. That it might even be precious and valuable to Him.

There is a story in the Old Testament about King David. I'm not going in to all the details here, but David was about to offer a sacrifice to God. And this guy, Araunah, told him he'd give him the wood and oxen to sacrifice. (Don't tell the PETA!) David insisted on paying him for it. He said he wouldn't offer to God a sacrifice that COST HIM NOTHING.

And sometimes when it is really hard to sacrifice and sometimes when it is really hard to praise because it feels like my heart is so dry and barren, my mouth is glued, and my lips are stuck together, I say to myself, I will NOT offer to God sacrifices that cost me NOTHING. Here is my sacrifice God. It is the best I have, and it cost me something. God is good, all the time.

Rain

Something horrid happened last night. Joel was on his fifth happy day, and I was loving it. In the evening I was holding him and we were "chatting" and playing. He was lying against me and he got really excited. When he does that he sort of waves his arms. And one of those arms was against me. I don't know what happened, but I think I felt a little something "give" and he started screaming.

Don't worry, I don't think anything actually broke. He cried really hard for about 2o minutes, and I cried too. I felt so awful, and he had been so happy just moments before. It was horrible to see that happy little face register the shock and then the pain. And that was the end of the happy playing for the rest of the evening.

It doesn't hurt him to move it now, I don't know what happened, he just got it twisted wrong or something. But it is the sort of thing that I dread happening. The reason I dress him so carefully. When I change him, I don't lift him by the ankles, I lift him under the knees. When I take his temperature under his arm, I lift that thin little limb so carefully. If I need to bend a leg or arm, it is very slowly and very cautiously.

Getting him in and out of the car seat is an endeavor I absolutely dread. I can get him in ok, most of the time, but getting him out, I just can't seem to do it without making him cry. It's like his soft little body just melts to the seat and I'm desperately trying to spatula my fingers under him without pinching him or twisting a bone, or compressing his spine, all the while trying to do it without having his head pitch forward or to the side. If you own a spatula, you know that it is shaped nothing like fingers.

It was a bad end to an otherwise great day. I'm still walking on eggshells, dreading that he might actually have another bone bruise which will make him unhappy for a week again.

Susan, thank you for the song you sent. The lyrics are beautiful. I've had another song in my heart lately and I'm going to end on that note, I think.

"Our Hope Endures"

Natalie Grant

You would think only so much can go wrong

Calamity only strikes once

And you assume this one has suffered her share

Life will be kinder from here

Oh, but sometimes the sun stays hidden for years

Sometimes the sky rains night after night

When will it clear?

But our Hope endures the worst of conditions

It's more than our optimism

Let the earth quake

Our Hope is unchanged

How do we comprehend peace within pain?

Or joy at a good man's wake?

Walk a mile with the woman whose body is torn

with illness but she marches on

Oh, 'cause sometimes the sun stays hidden for years

Sometimes the sky rains night after night

When will it clear?

But our Hope endures the worst of conditions

It's more than our optimism

Let the earth quake

Our Hope is unchanged

Emmanuel, God is with us

El Shaddai, all sufficient

We never walk alone

And this is our hope

I'm so glad I never walk alone. 'Cause sometimes the sun stays hidden for years...

Rubber Band

I don't like August anymore. It was never my favorite month, and now I really don't like it. It has been a tough, tough month, and the first week of September was no picnic either. Just a total flashback to last year.

So I'm gong to sit here and try to be open and honest, though it's not too easy. Again, about stuff I've mentioned, but I'm going to re-deal with, now that it's all so fresh...

These times with Joel, the ones where he is obviously unhappy, these are the ones I'm specifically talking about. There are lots of other difficult things about life with Joel, but these are the ones that make me feel like a rubber band in my spine has been slowly tightened, a little bit, each day.


It feels like I'm a compound bow, or a ballista, the tension just slowly being ratcheted up notch by notch. Emotionally it is so strong, that I can almost feel it physically, everything is tight, tight, tight. How much farther can it go before it snaps and who knows what is release like a bullet flying out of me? Or maybe I'm a balloon so filled with air that I'm going to pop.


Yesterday and the day before were good days. Joel not only smiled, he even laughed a bit. He once again cooed and burbled and interacted with me. Days like that, the tension so suddenly releases and now I feel like a limp balloon, or an over stretched elastic or spring. I just flop around the house, limp and boneless. Happy, but useless. It's like you spend hours riding horse, or squatting to pull weeds. Suddenly you stand up, or get off the horse, and you feel like you are jello. Your legs are wobbly, and you just need to sit down! I fed my children and kept them clean, dry, and warm. That was it. Period.

So much of this last month is so much like last year. Even to the point where my prayer at night was no longer, "Please God, just give me one more good day," to "Please God, don't let him suffer." Because a part of me started to long for the day when it would just all be over...


It is so hard to write those words. It seems so selfish and so ... cold. To admit that I could actually feel like I just wanted my precious boy to die so it could all be over for us all. But I said I'd be honest.

I suppose it's not unlike when you just want the band aid YANKED off quickly. Hurt me and be done with it! Or if you ever have had those nightmares where you are hiding from something/one terrible and you keep having this urge to just surrender because the running and hiding are so awful themselves. (Yeah, I have pretty vivid dreams) Terrible times are ahead and you just want to "do it and get it over with."

It makes me feel so guilty, to almost "look forward" to Joel dying. I truly start to imagine the day when I can just grab Caeden and head out the door. No more 2 hour feeds, or cleaning a pump, or packing it up if we want to go anywhere as a family. No more meds, the thought of being able to grab the whole shelf full and chuck them all into the garbage!!! To go to bed exactly when I'm tired and not have to wait for Joel's tummy to empty and then hook up a bunch of equipment. Never be awakened at night again to the sound of seizures. No more phone calls with questions to doctors, no more appointments, no more hospital stays. To take a trip whenever we want. Overwhelming relief and freedom.

Does that sound terrible?

The thing is, I never think this way when Joel is happy. Heck, I desperately WANTED the CPAP, even though I was told it would make life so much more work for me. And while Joel was doing well and happy, it felt like nothing much. I was like - Oh PLUH-LEEEESE! Give me a break, this is nothing! That's how I feel about all of it, when Joel is doing well. 99% of that time I really don't complain about it all.

But when Joel is not happy, then everything weighs on me. Everything seems to suck life right out of me. It slowly gets harder and harder, the pressure is ratcheting up, the pain and pressure increasing, and I start to long for it all to end.

Me, longing for a time that just isn't so like living life in an emotional trench while WWI goes on around me. Day and night in a muddy, cold trench. I've got trench-foot and the rations are not too good. A wasteland surrounds me, and the enemy assaults me from a distance in a seemingly constant barrage... I can't wait for this war to end.

Which is a bit of a fallacy. I long for the relief, but Joel's death will release me from one battle and into another. Hardly a true end to the war. Just a different stage of it.

I know that, but months like this I can't bear to think that way. Maybe it's a coping mechanism. Maybe it's just how anyone feels when someone they love is sometimes suffering. Maybe it's trying to put a bright face somewhere into it. But when it gets like this, I almost need to be able to say "Soon rest is coming. Soon the tension, stress, struggle, soon it will be over. We'll be free." To say "When this ends, a worse time will come, one where I long to go back to THIS time every single day, I didn't know then how lucky I was" -- to say that is just something I can't face when it is so hard already. Believing that feels like it would just finish me right off.

I was speaking to a friend yesterday, a friend who has lost her child. She told me there would be some sense of relief, even though she admitted to wanting her baby back so very badly. It made me feel a little better. One thing that really makes me angry at times is that the thought of relief is attached to so much guilt. It was good to know that I'd at least get what I paid so dearly for, in a manner of speaking. I don't know if you can understand all this unless you've lost someone to a difficult death, but I hope you can get some sense of what I mean:

First there is suffering, sorrow, pain, longing for relief and guilt for wanting it. Then there is relief, and grief, sorrow, pain, longing for your loved one, and guilt for feeling any relief. So crazy at as it sounds, it's good to hear that at least the relief part of it isn't totally a myth.

I've really laid a heavy on you with this one. I don't even know if I would have been able to write it, if Joel hadn't had a couple of "good days" now. Several good days in a row give me the strength to face the feelings and let them all out. Once the "rubber band" feeling wears off. Of course, they also leave me feeling a bit rough, so yesterday, when I wrote most of this, I felt pretty tired, and, well, a bit rough, for most of the rest of the day. Good thing it was a good day!

Anyway, I feel bad leaving you with all this negative emotion, all this sadness and guilt, and, well, agony really, just there - BLAH. Like I emotionally puked all over your car of life, and I sure hope you've got a good air freshener in there so you don't have to smell it all day long. I don't know if one of those little trees will cut it. You need some FEBREEZE, man! Go out and watch a silly movie or something. That's what I'm going to do! And play some Lego with my 3 year old.

"This is my comfort in my affliction, for Your word has given me life." (Psalm 119:50) I'm still thankful for that.

Bummed out, and citing some lyrics.

I haven't been feeling super duper recently. I'm sort of stressed out. Anxious. Bummed out. And sad. Always sad.

You won't see it so much when I'm with my friends. I'm an extrovert. My happiest moments are usually with other people.

But I'm not feeling that great. It's really hard for me to see Joel not so happy himself. I start to get a little freaked out wondering how bad it's really going to get for him, before he passes away. Do you think it might be a little bit of an understatement to say that I'm dreading those last days?

And whenever Joel stops doing well, these anxieties overtake me. I can keep em behind me as long as he is alert, playful and happy. But when we hit a stretch like this, one where it's pretty much nothing but sleeping or fussing... what can I say? It is hard. Sometimes he doesn't even want to be held. He is HAPPIER when I put him down. That is the worst, I think, for me. I don't know if he just feels more comfortable, or if being in my arms is sometimes too stimulating when he wants to shut down and is having trouble doing it, but its really hard for me when he spends most of the day just lying in his bassinet or crib, because he just isn't happy in my arms...

Then there is the seizures. Still happening. Yup. And now I am getting suspicious that he might also be having "absences seizures." Which have got to be one of the trickiest ones to catch, especially in a child who is blind with a nystigmus. He's just not been himself, in any case.

And I'm dreading the approach of flu season. What else can I say about that?

Today I was taking Caeden to the library (Joel was with his respite worker, thank the good Lord for respite!). And while I was walking down, a song was playing in my head. It's a beautiful song, and it has great lyrics, which I thought I'd share here. I think it's a song that most of us sing...

Naked Heart
by
Julie Miller

Don't want you to see me like this,
Don't want you to know how it really is.
Put on this smile till you go away,
Hope that my eyes don't give me away.

Yeah, I can pretend that everything is alright
Gotten really good, done it all of my life.
Keep you at a distance so that you can't tell,
I'm not doing very well.

chorus:
If you found out who I really am,
If I showed you what I keep in the dark,
Stripped of my defenses could
Your love really clothe my naked heart?

Gotten so used to having this pain,
Can't imagine it could ever change.
If I should look at the truth inside,
Feels like I might not survive.

So I wrap up this part that doesn't look good,
And I make it look lovely like I think it should.
But if you only know who I pretend to be,
How can I know if you could really love me?


The cry of every heart, no? First truth in fiction, now truth in lyrics.

Truth in Fiction: Part Three

Earlier I said I hadn't a clue where to go next in this little series. This one is practically writing itself! Because right after I wrote my last blog, the one about crying, where I mentioned specifically crying in church, and then touched on my musings about how others might reacted?? Well Sunday afternoon I was reading this book and...

Wait a minute! Not so fast! Ha ha ha! Thought I was just gonna get right to it, without any intro, didn'tcha! Before I start, you know I'm going to need to write my usual explanations. So:

The first book I mentioned, The Little Prince, is full of pretty deep thoughts. I don't want you to think that I think that all worthwhile fiction has to be so deep and philosophical. Sometimes the truth you find in fiction is of a very deep and profound nature.

But sometimes it's not so much a DEEP THOUGHT, as it is a reminder of human nature. Or being re-inspired to do something worthwhile. Sometimes when a character is well-written, it is more that the book helps us to love and understand someone else. Like a book I really enjoyed written from the perspective of a teen who was autistic. Which gave me a fuller perspective myself! All this sort of thing is worthwhile, and I think it is also a way of hearing truth.

So I'm going to talk about a book series I love which is more along these lines. I'm sort of picky about my book series. I really like fantasy books, but I have a serious pet peeve that just about everybody and their dog thinks that they have to AT LEAST write a trilogy (as if they were Tolkien himself!) and sometimes they can't seem to find an end to the story after 10 books!! Sheeeeeeesh! One reason that bugs me (aside from the fact that the "to be continued" is usually a YEAR later, unlike TV where you just wait a week. Come on people, unless your writing really does rival Tolkien, I'm really NOT going to remember what I read a YEAR AGO!!) is that usually the writing and plot just gets sloppier and sloppier as the books go along. KNOW WHEN TO FINISH! (Ha ha! Some of you are saying "Look whose talking, Honey!")

Ok, that was all an aside. AHEM. As I was saying, I'm picky about series. I don't mind them as long as each book is complete in itself. If you can't wrap up the story in one book, I will grudgingly let you go as far as three books, but you better be just as good in the third as you were in the first!

This series is NOT fantasy and it IS complete, each book, in itself. There is a sort of progressive story line, but not the sort that if you miss a book, or start in the middle, you will be lost and confused. The series is the "No. 1 Ladies' Detective Agency" by Alexander McCall Smith. Sounds like it might be a mystery series, and it is, SORT OF. Only one murder in the 12 books I have read, the mysteries involved are more about human nature than anything else. I love the books in the series because after you finish reading one, you feel GOOD. You feel like human beings are worth knowing and understanding. You feel like you want to go out and meet your next door neighbour. You know that the next time on the bus, you are going to stand up and give your seat to someone else. That sort of thing.

But it is all FUN to read, and it very gently pokes fun at human nature. I see myself in the pages, and I feel both amused, and sometimes humbled. I think that if I only ever read this sort of fiction, my mind would be a better place to live in. Ya know? All that while just enjoying yourself and being amused.

So, on Sunday I was reading the latest book in this series. Guess what the title of the first chapter was? "You Do Not Change People by Shouting At Them." (It contained an incident of really bad driving) How's that for truth in fiction!!

But that wasn't the really funny/strange thing. Hear is a direct quote from the book which I read on Sunday, the day after I wrote my last blog, and right after church:

"...this woman, moved by some private sorrow as much as by the words being spoken, cried almost silently, unobserved by others, apart from Mma Ramotswe, who stretched out her hand and laid it on her shoulder. Do not cry, Mma, she began to whisper, but changed her words even as she uttered them, and said quietly, Yes, you can cry, Mma. We should not tell people not to weep--we do it because of our sympathy for them--but we should really tell them that their tears are justified and entirely right."

Now what do you think of that? Precious Ramotswe is one of the main characters in the book (the story takes place in Africa, and Mma means sister and is the traditional way of addressing people, like "Ms.", only more friendly!) and she is sitting in church listening to the sermon when she sees this other lady crying. Isn't that a funny co-incidence, considering what I wrote the day before??

So, anyway, I confidently recommend this series to you. If you like stories about human nature, the sublime moments, the failures, and the humorous quirks, you gotta try these stories. If you like stories that warm your heart, make you smile, and maybe even inspire you, you'll like these books. They'll cheer you up. But more than that. You might also find some truth in there, in the form of simple, down to earth wisdom.

Sanctuary

Here is an annoying thing about grief. Like feelings of "romance," it comes and goes when it pleases, with no warning and no consideration for place or timing. You know what I mean? You might be out in public somewhere with your love, and suddenly you are over flowing with passion for your beloved, but the time and the place is all wrong. Later on, you are home alone together, cast a look over, and - mheh - the feeling has passed. Now you just want to laze on the couch with a book, by yourself.

Grief is so much the same, but not in the good and fun way that passion has.

I'll be at church, or I'll be in bed at 11pm with a just about sleeping husband, and BAM. There it is. The sadness, the sorrow, the tears welling up ready to sob. A place and time where it is not comfortable, not considerate or not private enough for me to feel I can let go and cry. So I stifle it, choke it all back and try not to think about "things."

Later on, when I am alone in the shower, or having a heart to heart with a friend - I got nothing. I can't muster up the feelings for a good cry-fest. I want to unburden myself. It's all in there somewhere, a dull throbbing like a heart-headache. A general feeling of malaise that won't pass. A heaviness that I carry around somewhere at the back of my emotional refrigerator as it slowly goes bad.

I long to weep. I step into the shower and think hard about all the things bothering me or making me sad. I even squeeze out a few tears. But it just won't be forced. I locked em in somehow, and now it has rusted shut. Merely turning a key will no longer release it.

I don't know what to do about the late night times I want to cry. Steve notices if I get out of bed, and he notices if I cry, either way it means HE ends up sad and sleepless as well. I can't see a way to do it without robbing him of rest.

A friend said I should just go ahead and cry in church. That's really hard for me. Everyone there (it's a VERY small church) has only ever been caring and supportive and understanding. Still, the thought of openly weeping Sunday after Sunday, well... it's hard for me to get past myself. I'm worried I'll be distracting (did I say it's VERY SMALL?) to everyone else. I'm worried I'll be rushed by concerned people who think something really awful has just happened to Joel, when in reality something awful HAS happened to Joel, it just happened at the moment of his conception, not in the last week. Horror of horrors, in my mind, I see myself losing control and sobbing until my pastor has to stop the sermon and ask if I need prayer! I don't feel comfortable with that much attention on me all at once.

Some of it is my own silly fear of being so "needy." I shouldn't care, but I worry that people will talk. Say I'm not "taking it well."

And it is hard to be so raw in front of people. So raw that I am unable to handle any well meant attempts at comfort. I'm afraid instead of crying with me, people will try and comfort my tears away. Really, my tears ARE my comfort. They are my release of the sad, the painful, the negative. It is my "brave face" that I desperately wish people would comfort away, until all the tears spill out in a torrent and wash my emotions clean. Yes, sometimes I long to be peeled down to the core, but I lack the ability to ask this, or to give the key, while others seem oblivious that there even is a key, or a core to whittle out.

Part of it, though, is just sort of the nature of grief itself. It is hard to grieve in a crowd. Sorrow, by it's very nature, is a somewhat private affair. As the poet says "Smile and the world smiles with you..." but "one by one we must all file on through the narrow aisles of pain." Sometimes there is room enough for two or three, but most real grieving isn't done in a large group. There is just something intimate about it all. So very personal. All this peeling, and whittling and comforting is best done in a quiet place... a place of "closeness."

So I bottle it up from time to time. A sour and bitter vintage, if it ages too long. Would anyone like to share a cup of sorrow? It's a bad year, and if you try and wrest out the cork, you'll find it disintegrates right into the wine itself. I've lost the corkscrew as well, another problem...

I suppose I could/should share at prayer meeting some time. The whole thing about how I might be seeing crying in church from time to time, and everyone should pay it no mind. I'm really ok, and there has been no new tragedy. I'm just grieving.

And the house of the Lord is one place where I often feel the layers of clothes slipping off until I am naked before God. I'm not really talking about the building, but being with the group of people who are the church. Oh, church buildings are nice. I'm not knocking them. They really are just a building, but it does seem to me that all the praising and the prayer done inside seems to change the very air of the place. Until even the wood and plaster and paint and carpeting seem to be imbued with something special.

But what I am really talking about is the group of people that change the building, by worshiping God there. It is being with this group of people, engaged in singing and praying that really do something hard to explain if you've never experienced it. It's like the material world around has become "thin." And what is invisible can be seen glowing through. So that when I'm there, in the building with these people singing about God, His presence, which is with me always, takes on a hue. A depth. A sound. People say they "felt His presence." Because He's always there, but there is a special thing being together with others worshiping and all I can say is that the reality of the material world going on around you grows a little more faint, and the reality underneath it all, the immaterial and spiritual world, seems to get more vivid, more alive to you.

What I am trying to say is that being in church like that often just opens up the lock. God is not kept out by emotional Tupperware, or rusty lock boxes of self-control. He always knows just how to whittle away my brave face until everything inside is burning brightly and threatening to overflow while I struggle to hold it in. It's a good thing, this peeling. It's a powerful thing, being exposed to the core. And sometimes it is a difficult thing. I'm working on letting go more, not being so afraid to let it out.

Sanctuary. noun holy place; place of refuge.

You can find a sanctuary in the church. Sometimes you can find it just with a couple of friends who believe in Jesus. Where ever you come across it, it is the perfect place to grieve. A holy and safe place.