Birthday Blues

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Green-Eyed Monster

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

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

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

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

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

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

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

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

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

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

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

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

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

How Many Words for Snow?

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

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

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

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

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

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

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

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

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

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

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

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

In the Majority

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

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

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

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

Now, where to go from here?

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

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

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

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

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

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

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

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

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

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

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

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

Day-mares

My reasons to write this blog and NOT write this blog are very similar. I'm going to engage in a bit of rather frightening honesty, and you know I seem to be honest without too much concern.

Well, truth is, sometimes I do force myself to be honest, though it is usually a bit scary. It's also true that by nature I like to discuss and share things. I'm more one of those "overshare" kind of people, than a reserved person. Still, like everyone, I keep some things to myself. I do have my secrets too.

So I've never really spoken about this with more people than I have fingers. Because sharing it might make you think I'm crazy. Certifiable. Or sick. Like mentally sick. I'm sort of afraid by talking about this, you'll start looking at me a little funny. Watchful for signs of a complete breakdown.

Which brings me to why I do want to write this. I sort of have a hunch that I'm not really insane. I kinda think I'm not alone here, and that the one or two people I've spoken too and could relate to comprise a much larger, "normal" group. I think maybe it is something that lots of people don't talk about, cause it is so yucky and scary, but many of us experience.

I'm talking about something I sort of touched on once. Remember when I wrote about all my worries and fears for Caeden? About what I called my "horr-antasy" with the picnic and the enraged bear?

I'm just going to say, people, it's deeper than that.

And I don't really think I'm going nuts, because its all happened to me once before. This is not my first run-in with grief, though, yes, it is the hardest and the worst. So I have experienced this before and over time it went away.

Day-mares. That's what I am going to call them. Not just obsessive worries about Caeden. I think they really best resemble nightmares. Only I'm completely lucid and in control of all my faculties. Which is why they also resemble a fantasy. Only fantasy sounds like something enjoyable, something you WANT to have happen. These are the opposite. "Horr-antasy." Day-mares.

They are the thoughts and images that seem to infest the land of grief. Infest them like cockroachesor rats. Only instead of coming out at night, they scuttle across your mind in the bright light of day, when you open a memory, pick up a line of thought, move around various activities in your mind. Voila! A creepy-crawly starts scurrying across your brain.

And with a sick (but normal) fascination, you watch its progress, every squirm and squiggle of it.

I've said before that I don't have nightmares about Joel. I don't. It surprises me. But I do have day-mares. Though Joel is not always even a character in them, I know what has & will happen to him is the driving force behind these thoughts/images.

Maybe this is even the reason I DON'T have nightmares about Joel. I STILL have nightmares that are job-related, and it has been three years since I worked. But when I was teaching, I was stressed, but I was busy! No time to think about anxieties during the day. I planned, and marked, and gave an incredible amount of energy interacting with my students. I came home and went over my day in the shower. What I should have done differently. What worked. How I wished I could reach the students who were in pain, who were sad, who were angry. Then I ate my supper and I spent the rest of the evening doing all I could to forget and relax and it usually worked.

But at night I would frequently have dreams. Dreams that my class walked out on me, or that I had no plan, or even idea of what to teach. Dream I'd lost my day-timer, or that I didn't even know the day's schedule. All sorts of "fun" things, though I suppose they were not really that frightening. Well, unless you are really afraid of teen-agers! Which is possible. They can be scary.

Joel is different. I do escape at times, in a book, movie, or video game. Most of the time, though, no matter what I am doing, he intrudes. The whole thing is just too big. Too in my face. And I guess I'm not the sort to try really hard to block it out of my mind. I'd rather face it.

Maybe all that has nothing to do with it. Maybe it is just a normal coping mechanism your brain kicks into when faced with such a heavy loss. It just puts you into "day-mare" mode so that you can rest at night. I don't know.

But I'm sharing this for those of you who have them too. So you won't wonder if you are going nuts. Or feel guilty. Or alone. Like I did the first time grief happened to me. I was only a teen, so it was even more isolating.

And maybe we all have these mind-cockroaches that creep across from time to time. I no longer really remember if they ever happen when things are good. If they do, it's pretty infrequent. Now, it happens a lot. And it can be disturbing.

Here are some examples. Like I said, they are disturbing. So don't read em if you are squeamish. But I want to put some of them out there so that if you are reading this and you have them too, you know I know what it is like.

There are the ones that are "fears," though I often don't feel really afraid while I think them. So while we are driving somewhere I'm picturing a car going through a red and hitting us. I'm seriously hurt or dead. Maybe Steve too. The boys are "alone" in the world.

We are at the pool. Then I see Caeden floating in the water. I wonder what that would look like. Feel like. I "see" it in my mind's eye.

Sure, these things, I think, come to those of us who are in a "good" place in life too. Parents have these feelings/thoughts/fears/images about their offspring.

But mine come all the time. And I get really graphic pics with them.

They are not the really disturbing ones though. Really disturbing. I get morbid thoughts too. I mentioned them once before, when I was sick. But now I'm talking about something a little different. I'm talking about visualizing Joel, when he's dead. Or finding him dead in the morning. I have even had a "horr-antasy" where I was wondering about how long before I had to call the undertaker. Then I was wondering how Joel would look, lying there having his blood drained out and preservative put in. His tiny, naked body lying there, looking cold and blue. Wondering how the undertaker would "treat" him as he dressed him. All that sort of stuff. Yeah. Pretty disturbing. If you are disturbed right now, think about what it is like for me!

But it gets worse. The real "kickers." Disturbing "day-mares" about violence. And I'd just like to say, in case you are getting worried, that just like in real dreams, where you do things you'd NEVER do in real life, so these wicked little visions.

So while I'm pounding in a stake for my tomatoes, I'm picturing turning to Caeden and using the hammer on him... Or while chopping up carrots... ok, I gotta stop now. Too disturbing for me, too. Horrifying and horrible. Violence. And I'm the one doing it. Things I'd NEVER really do. Trust me. I really wouldn't.

I think these little "day-mares" spring from my anxiety that I somehow won't be able to "handle" everything. That I will break down, or whatever. That somehow I will "destroy" my family because I won't be able to cope, when they need me most. I'm not sure. They are a bit mysterious. They just happen. And when they do happen, I sometimes don't even have a strong emotional reaction to them until they have scrambled back under whatever rock they came from. Then I feel pretty yucky.

I try not to give in to them too much. I try to get my brain on another track, or do something to take my mind off things. But often I'm "knee-deep" before I even see one coming. Man, they sure are yucky.

So I put some of the worst ones out there for you. In the hopes that if you are out here in this sludgy wasteland of grief, dealing with these disgusting pests, you won't feel as alone. If you are having these day-mare too, then rest assured, I think you are normal. And even still mentally sound. You might even be coping well. Don't be afraid. You are not going nuts. And maybe send me a note and let me know you are fighting them too. Then I'll feel less lonely as well. And more "normal" myself.

Navigating the Medical System: Nurses & Receptionists

I'm so not a pro when it really comes to the medical system. I feel sort of funny offering any real advice about it, cause every time I deal with that system, I find out how silly my understanding of things was. But maybe I can say something helpful, at least if you have NO experience, surely I GOTTA know something helpful, right?

So, let me tell you what I have learned about receptionists, or medical assistants, or whomever it is that you must speak to and go through in order to reach your doctor.

The stereotype of the very protective receptionist is often true! It seems that their job must include a lot of "weeding out" of people who really don't have a referral, or who are just plain old nuisances. I sometimes wonder if doctors deliberately hire people who are "bouncers" of the medical world so that they (the doctor) never have to be seen as grouchy or mean or evil, etc.

Which is why I absolutely HATE when the hospital discharges me and tells ME to phone to make follow up appointments. I can never explain it the right way for the receptionist to understand at first that YES, THERE WAS A REFERRAL!! I usually word it in some sort of wrong or confusing way and spend several frustrating minutes trying to assure the appointment arranging personnel that NO, I REALLY DIDN'T JUST GET YOUR NUMBER FROM THE YELLOW PAGES, DECIDE MY SON NEEDS AN ENT, AND PHONE YOU ON MY OWN INITIATIVE!!

Do people actually do this? Do they just decide to call a neurologist, ENT, orthopedic doctor, whoever, just on their own whim?? I don't know. Maybe they do. Because the receptionist for sure sees it as part of her job to make sure no one gets through to the doctor this way, but that proper protocols are followed and paperwork is DONE! And no short cuts or self-diagnosis. :)

Which is why I love it when the hospital discharges us with the appointment already booked, or at least tells me that THEY will phone me. Whew.

But the receptionist can be a great help, so I try to remember their name. Really, it is just as important as the doctor's name. Because eventually the day comes where somebody made some sort of error. You or someone else forgot to make the appointment, or cancel it or whatever. And then it is ever so nice to pick up the phone and call and say "Hi, Janet, this is _____. I'm sorry, Janet, I'm asking a big favor and I know that it might be really hard to arrange, but ______." Trust me. Names are important. Get to know the receptionist if you can.

I love my ped's receptionist. She is great. She knows me well enough now, that many times she just offers "Would you like to speak to Dr. C directly?" And that is GREAT. Since things are so complicated with Joel, you should hear the messages I try to dictate, or how even simple things get muddled on the way to the doc's ears. Some receptionist will NEVER let you speak directly to the doctor. He's gotta call you back.

Receptionists are people you will deal with a lot, if you or someone you know, has a chronic health issue. Always be super nice and friendly, even to the grouchy ones. If it is quiet, smile and have a really short "small talk" conversation. You want the receptionist to remember you, and remember you in a really positive way. I don't know that it has ever made a difference in whether or not I got an appointment. But it sure has made it much more pleasant to get one on short notice. Or to have to rebook one I somehow forgot!!

That brings me to nurses. They really are the terrific advocates they are reputed to be. Most of our nurses have been fabulous, with a few exceptions. And they can sort of get or keep things moving for you, when you are stuck in the grinder at the hospital.

By which I mean that they can "nag" the doctors in a way you can't! :) So if you are waiting for some info or for a doctor to come in or order pain meds, or whatever, and you have waited a "reasonable" amount of time, call your nurse! She will be your advocate and she will check into why things are not moving along for you. Of course, things like CAT scans or MRI's are NOT things you can move along. But if you have waited most of the day for ENT, neurologist, etc., to come see you, ask your nurse very nicely about it.

But make sure you ask the right way. Of course, do it nicely. But I have found that how you word things sometimes makes a difference. So now if I ask "Do you know if the results of the X-rays are back?" and they say "No, I don't know," I always follow up with "Could you check for me?" Very important. Some nurses would check anyway, even if you didn't directly ask. Because you mentioned it, they'd sort of go the extra mile to find out. But some nurses won't. They might be too busy, or because you didn't directly ASK, they sort of don't realize that you REALLY want to know and are not just making casual inquiries.

When you ask them to check, they will go and phone a doctor or department (when they have time, of course) and not only will you find out important info. You will also help insure that you have not been forgot, or that there was no miscommunication or whatever. There have been a few times where I got a nurse to help me out with something that seemed to be taking a bit of an unusually long time, only to find out that it was forgotten or never order, or whatever.

Also, if you are a bit unsure about any sort of consult with a doctor or medical team, ask your nurse to be there. She really is your advocate! It has been helpful to me when I have later been confuse by something. She can confirm "Yes, they did say that." Or "Hmmm, I was confused by that too, so I'll check for you." Or even add helpful confirmations during the discussion. "Yes, Mom's correct, the Tylenol didn't bring down the fever." Stuff like that. And if I feel a bit intimidated by any doctor or meeting, having a good nurse there is really nice. Someone in your corner!

One thing I have started doing: I have made up a one page info sheet on Joel's condition and things particular to him. I ask them to tape it to his bed and leave a copy on his clip board. This way anyone who walks in to cover a break, or check him or whatever, has quick and easy access to information that is important. Because I have seen printouts from Wikepedia on Zellweger's Syndrome attached to his clip board! They are just trying to find out what they need and want to know about Joel. So now I help em out. My info is more accurate and more pertinent as it is about Joel himself.

I list the parts of him that ARE affected by the disease: eyes, liver, white matter of brain, etc. And I list the things that are not, but MIGHT become affected: hearing, adrenal glands. Then I tell them what he likes and what soothes him. He likes to be talked to, since he can't see. He like to be cuddled and touched. That sort of thing. And I even mention that though he is very seriously ill, and incurable, we DON'T know his life expectancy. And I keep it all to one page, which is really important, because I know that only a few people will have time to skim through a 4 page printout from Wiki!

It saves me from dealing with as much misinformation. Maybe I won't walk in to find a lot of brightly coloured but soundless toys tied to the side of his crib with the best of intentions and the worst of actual knowledge. And hopefully it makes the job easier, because the info is concise and to the point, and easy to read while you change the bedding, or listen to his heart, or empty the garbage, etc.

I really don't know if any of this info was helpful, or just bored you to tears. I obviously haven't learned as much I as had hoped through my experiences, as I feel this info is rather scanty and some of it you likely already knew. But maybe it was helpful. I hope so! When you are dealing with a chronic or terminal illness, you need all the help you can get.

Just a little update.

My mother in law is here, staying with us for a month to help out. This way, maybe, I can get in to the hospital to see my Dad more often, or maybe even just go over to my parents' house to help my mom. My mother in law, or Ma, as I call her, means that my house will be thoroughly cleaned, and unless I twist her arm, I won't need to do any cooking.

My Dad is still in so much pain. Yesterday (FINALLY) the rheumatologist came to check him out, and they drew a considerable amount of fluid off his knee. I am so hoping they can find some meds to help him. The fentanol (sp?) he's been on just hasn't made a difference. Yesterday I was there when they turned him, and I don't think agony is the wrong word to use. The nurse asked him "Do you have pain everywhere?" and my Dad replied "I sometimes wonder!"

On the plus side, no sign his leukemia has returned. And he does seem to be very slowly getting clearer in his speech and thoughts. I know he just wants to come home so badly, and it's so hard to see him in the hospital and in so much pain, just longing to get back home...

Joel continues to do well. I am grateful for the CPAP and for the oxygen we have from Palliative Care as we have now used it too. There was a night that I couldn't use the CPAP machine on Joel. (Because I screwed up his night meds and didn't give him his morphine, which caused him to have muscle spasms and be unable to sleep, and.... well, long story) He was fine on his side that night, but the next day he didn't really nap either, it was just an "off" day. By night he was sound, sound asleep and breathing very heavily. I put the CPAP on him, but his O2 sats would just not come up. I waiting 2 minutes and then said forget this! And we put him on the oxygen.

We only needed to use .5 litres and he did just fine for the rest of the night. But I think I learned a few useful things. First of all, I really do think that the breathing problems are cumulative. They might not show up right away as low oxygen sats, but over time I think he just gets too tired. Or if he has a bad day, etc.

Secondly, it is more evidence that he does have trouble enough at night to need support and it is NOT ALWAYS connected to being sick or to swelling in his airway. He's been fine every since the night of the oxygen use back on CPAP and his merry, happy self. Just that one night of oxygen was enough to pull him through.

Lastly, I learned, (or rather sort of confirmed what I already suspected) that there were very likely times that Joel's oxygen was low at home but we didn't bring him in to emerg. Yes, his breathing was heavy, but not particularly rapid, and I think there have been other nights like this where we waited until it got WORSE before we took him in. Or maybe, more likely, by about 4 am I would have woken up to that rapid breathing and loud stridor and then we would have brought him in, but he'd have had hours of low oxygen and struggling to breath. I LOVE the monitor!! LOVE IT! Sure, there are other things to assess when looking at his breathing. But the monitor is a useful tool, and more importantly, it can be relied on to WAKE ME UP! Unlike heavy, fast breathing, which is really easy to sleep through.

We had an appointment with the ENT yesterday, and Joel's tonsils and adenoids are very normal (on a scale of 1 to 4, his are a 2). Once again, we could clearly see Joel's epiglottis was falling back and obstructing his airway when he breathed in. The ENT doctor was so relieved that we all agreed surgery was not necessary, he couldn't stop smiling. He really is a very nice doctor and I know that he really was terrified of doing such a risky surgery on our little boy. So he promised to send a copy of his report to respirology, which I am hoping makes them feel just a little bit better about sending home a CPAP and oxygen monitor.

I was absolutely so very grateful for the home oxygen. I didn't expected to use it at night at this point, since we had the CPAP. It saved us a late night trip to emerg, and possibly a hospital stay as well. And once you are in hospital, it can be hard to get out again!! It just got us through the night, and Joel has been just fine since then.

That's just a little "update" for those of you who are interest. :)

Looking on the Dark Side

I got in to visit my dad today. Now that my mother-in-law is here and I have some extra respite hours, I hope to do that a bit more often. The timing is actually really good, because as my Dad recovers more, visits will be more important to help relieve boredom and keep up his spirits.

It is hard for me to visit, though. My Dad is still so very sick. It's surprisingly hard to see him like he is. The man who has always been around to help me now needs help with EVERYTHING. It hurts. Plus, he's been in so much pain lately. Something weird been happening with his joints, maybe some sort of arthritis or gout, no one seems to know for sure. But his joints are swelling up and painful. He grimaces and looks ready to cry just from having his bed adjusted. It makes me want to cry myself.

He was more himself today though. That was so relieving. He understood when I told him I'd bring him the first garden-grown & ripened tomatoes I had. It was so nice to get a response to what I said to him.

I'm still feeling hopeful about my dad, though recovery seems so agonizingly slow. One step forward, half a step back, sort of thing. But so far he remains clear of cancer and his digestive system seems to be healing up just fine.

A few weeks back, though, I really thought it was likely I'd be saying good-bye to my Dad soon. And with that I got a surprise.

I found out that I have NOT been depressed for the last two years. Seriously. I thought I was, because I'm so tired all the time. I was wrong.

Because a few weeks ago, I woke up and discovered that I was depressed, for real. I mean, I woke up actually depressed, and went "oh YEAH. THIS is what it feels like." Only the caps indicate more of a sigh than an emphasis.

And with that head on collision with the real thing, memories flooded back to me of a few times where I was depressed. I remembered what my old nemesis really is like.

With that came the realization that I have not been depressed in the last two years (other than maybe a bit when we first got our diagnosis). I have been very stressed out. I have been very sad. Sometimes frustrated. Sometimes discouraged. Angry, wistful, reflective, melancholy, wrenched with sorrow, panicked by inadequacy at times, frantic with powerlessness & protective instinct thwarted. Deep oceans of pain covered by a fragile peace. All of this and more.

But not depressed. Thank You God.

For depression is truly a formidable opponent. It saps you of strength and leaches the will to take any sort of action whatsoever out of you ounce by ounce.

I woke up in that horrible state of depression trickery. Ah, slow consciousness returning, feeling peaceful and rested and then, that Drop of Doom Fair Ride feeling. Your brain finally comes to that state of awareness of your life where it recoils as from a loathsome insect. Ugh. No. Not. This. Please. Tell me it is a dream, it's just a dream and it's really NOT THIS. But it is. And the bottom drops out of your stomach and out of your day and out of your life. Pleasant wake-ingness to this stone cold reality.

I'm sure most of you can feel this with me. It's that wake up in the morning and remember the day before you: lost your dog, lost your job, your boyfriend broke up with you, a fire burned down your house, you flunked out of school, you'll never walk again, your husband cheated, your best friend refuses to talk to you anymore, you or someone you love is terminally ill, you can't get pregnant, your child can not be cured - you see what I mean? I think we have all felt that feeling, no? The list could go on and on. The things that kick us in the stomach when we wake up in the morning.

Kick us in the stomach and make us ask "Why should I get up? I'll just get kicked again. And frankly, I can't bear the way the world looks from this vantage point."

I had that feeling as I woke up and thought that my Dad would likely die any day now. And my sweet little boy would one day give me the exact same thought on another morning like this one.

Shall I master the art of understatement and say it was "icky?"

It made me realize how fortunate I have been though. For I so am. I have actually NOT felt very depressed by this all. (ok, sure, maybe a little here and there. But not the REAL thing. The sort that goes on all day, day after day.) As I already said, lots of pain and all the other feelings that go with my life. But not really depressed. And it didn't last too long. Just a day or so, until my Dad seemed to start to recover.

It made me realize that I do have the gift of happiness. Most of the time, I learn to adjust to my life and be happy and peaceful about it all. Oh, sure, if you know me, you know I am a very up and down person. My highs tend to reach the sky and my lows are ever so tragic. But if you actually average out the extremes, I think I sit just above the median on the happy side. I am fortunate.

I also realized that depression is one day going to rear it's ugly head. It's just biding its' time, waiting for that perfect moment to strike, the moment when I lose someone I love dearly. That's not something to look forward to, is it? Scary stuff. Especially when I remembered how fierce an opponent it is.

It made me really think of my friends who have already lost children. Yikes. How do you guys do it?

So I'm going to try and "gear up" for the battle. Stay healthy. Stay as rested as possible. Soak up all the good & happy stuff that comes along without spoiling it with useless "if onlys." Keep my friends close.

And above all else, I'm going to try to get as close to God as possible. I'm going to try and wedge myself in. Like a limpet on a rock. Or a starfish. Those guys know how to hang on. And if I cling on to Him, maybe the waves of depression won't wash me out to sea. And you keep me in your prayers too. One day I might really, really need it.

Show & Tell

A friend and I have been having a talk/discussion recently. And I wanted to explore/share some of the thoughts and feelings I have had about it here, in my blog. We were talking about our struggles with two things: 1. when other people seem to be trying to place their pain "above" ours and 2. when we are tempted to "lessen" someone else's troubles by pointing out our own.

It's an awkward way to explain it, but it's the best I can do.

You see, we women have a finely honed social system worked out.

(No offense men, if you have one too, but I never have to navigate yours and I honestly haven't a clue about how yours works. Other than the assurance of my husband that you are really not that complicated. Which, being a woman, I am immediately suspicious that it is complicated and you are all just clueless about the complications. But I digress)

Our system has balances built in and we are to be equitable and supportive of each other. We've grown up a lot since kindergarten, and there is no teacher anymore. We just have silent rules about taking turns sharing problems. After we share our grief/troubles/woes, we are to sit down and let someone else have a turn. No one should hog the "limelight" or be too self-absorbed. Sympathy and kindnesses, caring and compassion should all be meted out appropriately, with generosity, but also with out any undue "hogging." Does any of this make sense? Or sound sort of familiar with how your internal monitor feels about it all?

It is a good system. Very supportive. Trouble is, though I'm all grown up on the outside, there still resides inside me an immature little girl.

And there are times when it is just so hard for me to sit and wait my turn. Show and Tell is difficult for me. It's hard for me to truly listen about your new sweater when I got a new puppy sort of thing. You know? I'm sitting on my hands over here, squirming in my seat and wondering when you are going to realize that my news is BIGGER than your news. Shouldn't I get a longer turn at sharing, since what's happening in my life is so much more traumatic?

For what has changed here now, is that what I'm talking about isn't the happy sort of show and tell stuff. Which we women share, but in a different way. No one wants to be seen as bragging about how good we've got it. So we are careful about sharing good stuff, there are different "rules" for that. Pregnancy can always be shared and rejoiced in, unless the other woman has lost a baby or can't get pregnant. A new house can be greatly rejoiced in with a friend who has already got a nice house, more reserved feelings shared with someone who is still renting. Etc, etc, etc.

Sharing our heartaches is different, but somewhat similar. More listening and empathy for someone who has lost their job, then for someone who has broken a favorite dish. After too much weeping on anyone's part, we tend to "bright side" things. Sort of an unwritten rule. Some weeping is necessary. Too much is an indulgence which is not good for you. And if you are just wallowing in self-pity, a note of annoyance might enter our voices and we might attempt measures of bracing you up, or at least dream about doing it.

Please don't think I'm saying anyone has done this to me! I'm just talking about that unspoken system, one that I take part it. The place I'm a member: the woman's sharing circle.

And some times I sit in that sharing circle and I'm barely holding my hand back while others share their hurts. It's not that I don't think they are important. I'm just that immature little girl. One at every show and tell, eh? I just feel like I should get more venting time, more crying time, more shoulders to support me and ears to listen.

And at times it is hard for me not to cut off someone else. And to do a little "bright siding" or "bracing up" myself, by pointing to my own life and how much worse YOURS could be if it were like mine. I'm not proud of that. I don't think it's that great.

And sometimes I even give in, like when my brother says how hard it was to have to give up his vacation cause my dad was so sick, and I point out that I don't get vacations anymore, and that the condition of my getting them again is that my son has to DIE. I don't know why I bother to do that. I mean, it does really suck to lose your vacation because your Dad has cancer. Regardless of the other miseries in the world, or who else is missing their own vacation.

It's just me, standing on my seat, waving my hand in the air "Is it my turn yet? Can I tell you about how bad it is FOR ME??? When's MY turn to talk?"

Sorry if I've done it to you. It's not only selfishness, I hope you realize. It is also pain speaking here. So I hope you will forgive my hand-waving-chair-standing self. Forgive me cause I am both selfish and sad. Really sad. THAT'S not a good combo.

And I will forgive you if you ever have done/do it to me. I mean "bright side" me, or "brace me up." Or even just forget that I hurt every single day and that sometimes makes it hard for me to give your pain both my ears, though I try.

That is one way that this blog is therapy for me. It's my own private "Show & Tell," though in this case it would be more appropriate to call it "Pain & Yell." I ALWAYS get to stand in the center and share here. I never have to wait my turn. I suppose that is one way that it is nice to have readers. Show and Tell (or Pain & Yell) really wouldn't be any fun if there was no one sitting in the circle and listening. Thank you! My own private therapy group, my own personal "Pain & Yell" and it is free!

I hope you can all hear my undercurrent of humour in this whole thing. Yeah, it is a bit dark, this humour of mine. But it is there. I don't always take myself, or my problems, completely seriously. Though the pain is real, and serious. So, I'm saying thank you, once again, to those of you who care enough to give me lots of time sharing my pain and struggles. I appreciate it, specially as I understand it might be hard to stand by with your own sets of problems and sorrows while I share mine. Sometimes over and over again. And I'm going to try my best to listen to you, and not denigrate your pain by pointing to mine as worse. Because hurting hurts. Period.

CPAP

Thought I'd write a bit here about our new CPAP and oxygen monitor. In case anyone is interested. Or maybe in a place where they are being considered for one.

These machines amazing me. I think this sort of thing is really the "pinnacle" of what science achieves. Something that helps people, and no ethical questions involved, unlike genetic engineering.


In my ignorance, I thought that the Oximeter, oxygen monitor, saturation monitor or "sat." monitor, as it may be called, measured the oxygen in the skin somehow. Silly me!


The probe actually is an infrared light that beams through a toe or finger to a sensor on the other side. As the light goes through, it meets hemoglobin molecules which can carry up to 4 oxygen molecules as they course through your blood. Based on how the infrared light reacts as it hits these molecules, the oximeter can read how much oxygen your blood carries, and what your pulse rate is. Amazing!


The CPAP is just an all around cool idea. And it works! So simple, so effective. Just blowing air into your nose (sometimes mouth too) creates the pressure to hold your airway open!


So, how is this new equipment working for us? Well, in all honesty, I'm not really getting much more sleep. Not yet anyway. We need to wait for about 2 hours after Joel's night meds before we hook up the machine. Because it holds Joel's airway open, if any tummy contents come back up his throat, they could just go straight into his lungs. Which isn't too good, and can cause something called aspiration pneumonia. You get the picture. So we have been careful with this, and so far, so good.

However, this means Joel is sleeping for about an hour and a half before we can hook up the CPAP. (I just can't seem to squish his feedings and meds any closer together.) Which is lost sleep for us. And right now, for some reason, Joel is waking up really early. Between 5:30 and 7am, instead of between 7 and 8 am which was his previous time to wake up.

I'm not sure how much of this is due to him needing less sleep as he is sleeping better, or how much of it is that the CPAP starts waking him as morning approaches and he enters a lighter sleep. I suspect it is a bit of both, especially as he is still napping quite well each day.

My hope is that as time goes on, we will all get more used to the machine, and Joel will start to sleep a bit longer. If not, it is not that big of a deal to me. It's more than worth the trade off to see him sweat-free with relaxed breathing in the morning.

For it seems to me that the CPAP really is working. It has only been just over a week, but I think it is making a difference. When I have seen his early morning breathing, it has remained relaxed.

To me the surest sign that Joel does obstruct and the CPAP helps, is when I connect the monitor and flip him on his back to hook up the CPAP. As soon as he is on his back, his oxygen level drops down enough to set off the monitor. I don't even have the mask to his face before it drops. When I hook up the machine, it slowly goes back up and the sat monitor has not once gone off with the CPAP on, even though Joel is sleeping on his back. Which is a position I have not dared to put him in since March. So yes, there really is obstruction, and the CPAP for sure keeps his airway open.

We have been awaked once, due to the mask slipping on his face and breaking the seal needed to maintain air pressure. But that's it. On the whole, I am very pleased with how it is going. Last time we had a single does of dexamethasone, it lasted a week. Now it has been two solid weeks, and he seems good to go.

Funny thing is, it is still a bit hard to relax and go to sleep. I just have gotten so used to being stressed about his breathing. So I lie there and think : What if the mask blocks his nose? Oh, yeah, the monitor would go off. What if the pressure isn't strong enough? Oh, yeah, the monitor will go off. What if the probe falls off his toe? Oh, yeah, the monitor will go off. What if the power goes out? Oh, yeah, it has a battery. You get the picture. I just can't seem to fathom that we have a system that is sure to tell me if a problem develops!

So falling asleep has not yet been easier, but I hope that as time goes on and things continue in the same way, I will eventually relax. And for sure, no waking up at 4 or 5 and listening to this heavy breathing and wondering, wondering, wondering if I should get up, or if it is still "ok."

There are not too many plusses to Joel's illness. But if you are going to have an illness that makes your tone so low your airway doesn't stay open, then it's a small blessing that you also don't move around much in your sleep. Which is one reason that Joel's monitor never goes off.

I knew this well, but I was strongly warned a few times that a monitor would only decrease the the quality of my sleep, as they tend to go off so much due to false alarms. Which I do know happens on active, healthy children as I have stayed in the hospital with these children as room-mates. And yes, I did NOT sleep well. (course, who ever sleeps well in a hospital anyway?)

Joel, I knew, would be a different story. I tried to tell them that, but you know... ? Still, I am grateful that it has been so "quiet" at night. I try not to take things like this for granted.

The big thing about all this stuff isn't even so much that I believe it might give Joel a bit more health or a bit more time. As much as I say that it is just so hard to let your child go, even when you know it is to a better place, it is even more basic than that.

I don't know how many of the doctors think that an inability to let go is why I push for stuff like a monitor or CPAP. In the name of truth and fairness, what really makes me do it is simply this: I hear my boy struggle to breath. Even if it were not life threatening, it hurts. Sure, I want him around for as long as possible. But when I wake up and hear him struggle on and on... well, I just gotta do all I can to help. If his breathing stops suddenly, well and good. He's let go. As hard as that would be, I think I'm going to be ok with it.

But when your baby is still TRYING so hard, you just gotta do all you can. I know any mom will understand this. What mother could just lie there and listen to your child in such difficulty? It's not about death prevention. It's about HELPING your child do what they are struggling so hard to do.

So that is how the CPAP has been for us so far. Maybe in a month or two, I'll put a little update on here, for those interested.

More about Prayers

Today was a good day. My Dad got off the respirator, and even moved out of ICU and into his "old digs" on G6. He still has far to go, but it is so nice to see him start to improve. And to know that his horrible thirst will soon be a an end!

Joel had a great day, too. He slept outside while a friend and I fixed up the yard. (No weeds in my flower bed!!) And was awake a bit out there too. He got some cuddles from my friend, while I wiped the inside of a very disgusting car. (Seriously, seeing the inside of our car would be enough to convince you that 1) trolls exist, 2) they can drive a car.) He even fell asleep in her lap. And he was contented all day and was full of smiles and babbling.

It was a good day. I am thankful.

You know what else I'm thankful for? Joel can still hear enough to respond to voices. I don't know where his hearing is at for sure, as his last hearing test was in January. But I know he still responds to sound. And though I should really get him in to get his hearing tested again, I am very grateful that he can hear and is happy.

It was a source of great agony to me when I first learned that Joel might become completely blind and deaf as well. It just seemed too horrible for words, the thought of my baby cut off like that. Then I found out about cochlear implants. This implants bring hearing to people whose ears are no longer functioning. I felt an overwhelming sense of relief. No one could restore Joel sight, but he wouldn't have to be in both silence and darkness. But Joel would not be eligible for this surgery until he was at least 2 years old.

So, while I didn't bother asking God for a healing that I knew would never come, I did ask Him to please keep my little boy with enough hearing to make it until he hit two years of age. That was it. Just that he'd have at least enough hearing to be ok with hearing aids until implants were possible.

At almost 18 months, they tested Joel with a highly accurate test, a sedated ABR, to measure his hearing. I was sure that they would find it had decreased. I expected we'd need some hearing aids.

But we didn't. Joel's hearing was fine. And now Joel is just about 2 years old. He has one month to go. God has answered my prayer.

I'd like to ask those who pray, to make an "add on" to this. I'm no longer certain if Joel's health would be good enough to handle surgery for a cochlear implant. I don't even want to think about the sort of fight we'd have on our hands if Joel was deaf and we decided to try for an implant. And I sure don't want to have to make such an agonizing decision.

So please pray for Joel's hearing. I'm asking God to keep his hearing at a level that can at least be helped with hearing aids, right until his last moments. Of course, being well enough for a serious surgery would also be fine. I'm asking that my little boy will never have silence along with the darkness. That is the main thing. Next week I'm going to schedule a hearing test. So please pray!

If you read and remember, I wrote in a blog awhile back that I wanted people to pray that Joel would not suffer in the end. I'm asking for God to take him quickly, without a long, drawn out illness or decline.

It's a tough prayer for me to pray. Sure, I don't want Joel to suffer. But asking God for this feels like saying it's ok for Him to take him NOW as long as he doesn't suffer. But I don't want to give him up NOW. I want to keep my baby. And as long as he seems so happy, I'm going to want to keep him. Nothing but suffering will make me feel willing to let my baby go.

Catch 22. And I'm making it hard for God to answer this prayer too. I'm not "helping" Him at all. By which I mean that I could have just "ignored" Joel's breathing difficulties and I don't think it would have been long before he would have been too tired and his body would just have gone into respiratory failure. I'd never have felt right about that, plus like I said, I would never willingly give up a single happy day, and I would have ended up losing a few, like the one I just had today.

So it is a hard prayer. It feels so out of control (yeah, I know, like I was ever in control!!) to ask for God to take Joel so quickly. No warning, you see. But I really don't want Joel to have to suffer just so I "get used to the idea" that death is imminent.

Hard, but I'm going to pray it. I'm asking God for all the good days possible. And that when the good days "run out," that God will take Joel home with out too much pain, illness, or suffering.

Will God answer this prayer? I really don't know about this one. I sort of thought God might answer the one about Joel's hearing, and I'm so glad that He did. But this one, I just don't know.

And I feel guilty asking. I think every parent on the support group is praying for this. So why should I get it? I know children that have been sick, sometimes it is a long, drawn out battle. I hope if God answers this prayer with a yes, no one will hold it against either God or I. I wish very much that every child that dies would have a peaceful death.

Whoa! Look what happens when I sit down and write with no actual plan in my head!!! I go from "It was a good day." to "Every child should have a peaceful death!!!" Yikes! I'd lighten the mood, but I can't think of any good jokes right now. Though maybe someday I'll tell you about my Most Embarrassing Moment. Caroline Phillipson has already hear about it, but since she is preggers, I'm banking on it that she'll not remember anyway. Right, Caro??

So having lightened the mood (I hope), let me say that I am grateful for a good day. No, make that a terrific day. I remain grateful for amazing friends who come over and help in so many ways. I'm grateful that my Dad is doing better. And that he can soon quench his thirst! I'm grateful Joel can hear my voice. And I am grateful for every single smile!

Prayers

My Dad has done so much better than I had expected. He's still not "out of the woods," as they say, but we have lots of reason now to hope.

I can't believe he hung on so long with his infection and almost non-existent blood counts. I can't believe he continued to do so well for as long as he did as his counts started to come back up. And then, when they did his surgery, it seems almost miraculous how well it went.

Because his platelet counts were still dangerously low for surgery, they prioritized the steps. Then when it looked like my Dad was just bleeding too much, they planned to stop and stitch him up.

First they did the colostomy. They closed off his intestine before the infected part, and brought the healthy end up to an opening in his side. His blood loss was minimal. So then they drained the abscess they had found. Blood loss still minimal. So they went on to removed all of his infected sigmoid colon (put in the technical stuff for all the nurses I know). They got done EVERYTHING they had wanted to do with no great blood loss. Which gives my dad the best chance for recovery.

Thanks everyone for praying. I know that much of this was due to God answering those prayers. I am very grateful.

And I sort have been wanting for some time now to write about prayer, miracles, and Joel.

I had no problem asking people to pray for my Dad's recovery. In fact, though on one hand I have been continually surprised by how my Dad is doing, on the other hand, I felt that God might answer those prayers. So I have freely asked for prayer.

I think it might strike some people as strange, but I have never asked for prayer for Joel to be cured. This is NOT because I don't think God could cure Joel. It's for a different reason.

I try not to waste too much time and energy on prayers when I know God's answer will be "No, not this time, my child." I just think why frustrate myself senselessly with something I know just isn't going to happen. And it seems to me to only be evidence of a sort of immaturity.

For every morning for about 2 months I has the same conversation with Caeden. I'd say " Caeden, what would you like for breakfast?" And he'd say "How about some cookies, Mommy? Can I have some cookies, and some candy?"

You can imagine my answer, I hope. The same answer every day. "No, Caeden. No cookies and no candy. It's not good for you. You need some good food for breakfast." Then the begging and whining and pleading started. "Caeden, you NEVER get cookies for breakfast. It's not going to happen today, or ANY OTHER DAY." Finally: "Caeden, NO cookies for breakfast. Mommy's not going to change her mind. It is like the law of the Medes and Persians, which can not be altered or revoked!" (yes, I really do say this to him, and yes, he vaguely grasps that this really, really means no.)

We had this conversations just about every day for WEEKS. And it's not like I am a Mom who wavers a lot in her decisions or anything like that. It's more to do with Caeden's maturity level. While at times it drove me to exasperation, I never held it against him. It is in the nature of little boys to ask over and over again for cookies for breakfast. It is the job of a mother to keep saying no and never cave in.

I don't think that my prayers begging God for something that He's just not going to do are really exasperating Him. I'm pretty sure He understands every single bit of how hard it is for me with Joel, how much I love Joel, and that I'd do just about anything to help him. So I know He would understand my begging.

Still, when it was so clear to me that Joel would not be healed, it just seemed silly to ask people to pray for it. And sort of a waste of my emotions and time.

Why did I think God wouldn't heal Joel?

I have asked God for a lot of things in my life. Sometimes I really sort of know He's going to say yes. Sometimes I don't have a clue what the answer will be. And sometimes I know something will be a no, and then I don't ask. Really, if you want to see God answer prayer, the best way is to stop asking for things He has to say no to and pray for the things you know He will say yes to.

My husband and I have joked about this for years. Every time God answers a prayer, my husband will joke about how God seems to always answer my prayers with a yes. Then he tells me I better ask God for a million dollars. And then I tell him, again, that in order for God to keep answering my prayers with a yes, I try to ask for things that He can say yes to, and a million dollars is always going to be a no.

I'm going to make this as brief as possible. Joel's diagnosis was devastating. It remains devastating. But from pretty much the start of it all, I saw it pretty clearly. It wasn't what you would call a "vision" in the traditional sense. But I saw down two different paths. On one, Joel was miraculously healed, led a "normal" life. Everything in my life returned to the course that I had always planned. Two or three children, happy family, work, vacations, church, all of it just went back to it's course.

What good would come out of the healing, other than that my life would be easier, with so much less pain, etc? The people who already believe in God would say "Praise God, a MIRACLE!!!" The people who don't would say "It must have been a misdiagnosis. There is an explanation, we just don't know what it is." In the long run, not much would change for either group. Life would just return to the status quo.

And what about other parents of children with this disease? What would they say? How would they feel about my boy being healed, while their precious child worsened and died? Would they frantically try to believe and pray in order to receive healing? Would they be angry that God "played favorites" with me? Would God heal every single child for every single person who would pray and believe?

How could Joel's healing really bring any good? Sure, I'd be happy with my (relatively) pain-free life. But wouldn't other people only feel more pain? Have more hard questions about God? Or try desperately to please God for all the wrong reasons?

Because here is one thing I know about God. He wants our love of HIM. He wants us to trust Him like children trust their parents. He wants our heart full of Him, like a lover's heart is full of their beloved. The Bible says that God IS LOVE. And love is the key in our relationship with Him.

So while it might seem fair to say that those who follow certain "rules" will get healing, it certainly will not foster any love. Jesus looked at the crowd that followed him. Yes, they were all enthused about him. But he knew it was not really HIM. It was because he had fed them with miracle bread and fish.

A lot of people will wed a millionaire. But when a poor man weds, surely he has peace that the emotions declared are real and sincere. I'm not sure the millionaire really believes the part of the vows about "richer or POORER."

God could be the ultimate millionaire. Declare your love, give your vows, and the world is yours!

But God's not looking for a trophy wife. We are not that great as trophies, anyway, as we are so flawed and imperfect. What God is looking for is a sincere heart. One that loves Him for HIM, not for what He can give or do.

And the best way I know for that love to flourish is for it to be left in a less than perfect world.

Honestly, if Steve could just suddenly give me EVERYTHING I wanted, and that is exactly what he did, I am afraid my love would quickly start to change. I would come to expect certain things. And even feel I deserved them. I'm afraid my love would not develop and mature...

The way it has to do now. Because Steve is not perfect. He's a great guy, but sometimes he hurts me. He can't give me all I want. He can't even figure out, most of the time, what it is I want in the first place. He lets me down. And when all these things happen I can let one of two things happen. I can either say "Forget it. I can't love someone like this, " and I can withdraw my emotions. Or I can say "I'm still going to love you. I'm still going to be here tomorrow." And every time I do that, something amazing happens. My love deepens and matures. It grows up into something less about me, and more about Steve.

God is, unlike Steve, perfect. (Sorry sweetie, I can't say you are perfect, but you know I think you are wonderful, and I do love you!) God doesn't test my love with His imperfections, cause He doesn't have any. Instead, God lets my love grow and mature, become more about Him and less about me, by letting life happen. All the pains and trials of life, all the difficulties and tests, they are my choice to do one of two things: I can say "Forget it. What kind of God are you anyway? I got better things to do." Or I can say "I'm going to trust You. Please stay close to me, and help me through this. I want You here for my tomorrows."

These were my choices when Joel was diagnosed. I knew which choice I'd make. I knew that though God would not heal Joel, this incredible pain and sorrow would be part of growing more love for God, more trust. I'll be closer in the end, than I was in the beginning. I do love God, and loving Him, I want to love Him even more.

And I could see no real and lasting good come out of Joel's healing.

(Remember the blog I wrote about all the horrible stuff that would never happen to Joel? Being sick, being developmentally delayed, dying, all that stuff is not fun. But we all will be sick at times, and we all will die, eventually. Being fed, comforted, warm and loved, all that is good stuff. Joel has this. And when Joel dies, I know he'll be with Jesus. So maybe this sounds ego-centric, but I think that Steve and I will suffer more through all this than Joel will. I'm ok with that. I'd rather it were harder on us, than on him. )

Like I said, medical miracles get explained away every day. I couldn't really see how healing Joel would really change anything for anyone, except by making our lives easier.

On the other hand, I could see something else. I could see my heart breaking every day and I could see compassion growing in the cracks. I could see growing friendships with other parents who were also going through one of the hardest ordeals life holds. I could hope that I might be an encouragement, a support, a blessing for them. That would never happen if God healed Joel. And I find it is a privilege to do this. One I'd never willingly have chosen. But a privilege, nonetheless.

And maybe God would make a different miracle. One that would speak much louder than a one time miraculous healing. Maybe the miracle would be less showy, but more lasting. God could continue the miracle of me learning to trust and love him through it all. Maybe if people saw that miracle in my heart, it might speak louder than a physical cure. Maybe it might be a little "advertisement" for people in pain. "Here is a help for you. Here is the One I have found to be my support in this wasteland we call grief. He'll hold your hand, just as He holds mine."

There are a lot of other things I hope grow out of what I can only label as an ordeal of emotional devastation. Maybe one day I'll do some respite work for someone with a sick or disabled child. Maybe we'll foster or adopt a child with special needs. Maybe I will volunteer in Children's Hospital. Because I'm not praying and asking God for healing. I'm praying and asking Him for something I know He'll answer "yes" to. I'm asking Him to use all our pain to help us make things better for other people. I have no doubts at all that this is a prayer He'll answer.

A Lesson in Trust

I recently re-read C.S. Lewis's A Grief Observed. I really love that book. Not because I agree with Lewis on everything, (for one thing, he believed in a sort of purgatory after death, and I don't.) But the book is an honest and sincere account of his journey through a terrible loss, and it reverberates with me so many ways and on so many levels.


In it, all attempts at sounding pious or faithful, doubt-free, all attempts are abandoned. He just tells it like it is. And let me tell you, it's not great. Some people who go through a trial, only share once they have "emerged." You get to see a butterfly. But what happened in that chrysalis, or crucible, remains hidden and mysterious. Which makes it seem, perhaps unintentionally, effortless.


I love this book, for in it Lewis has opened up his process from doubt back to faith. It becomes transparent. You see the struggle from caterpillar to butterfly. And so much of what he writes I really understand. I feel the terrain is familiar. I'm glad I'm not the only one who is sometimes paralyzed by doubt and pain, and I'm encouraged that he seems to find his way through.


Lewis' wife died of cancer. Here is what that man who was a great defender of Christianity wrote after his wife died and he was thinking about life after death:


"Because she is in God's hands." But if so, she was in God's hands all the time, and I have seen what they did to her here. Do they suddenly become gentler to us the moment we are out of the body? And if so, why? If God's goodness is inconsistent with hurting us, then either God is not good or there is no God: for in the only life we know He hurts us beyond our worst fears and beyond all we can imagine.

If you think that sounds like a crisis of faith, how about this?


I am more afraid that we are really rats in a trap. Or, worse still, rats in a laboratory. Someone said, I believe, "God always geometrizes." Supposing the truth were "God always vivisects?"


Talk about honesty. Talk about doubts. Talk about the dark night of the soul.


These are the words of suffering and pain. I recognize them, having said them myself. Oh, not the exact words, of course. I have never thought of God as performing a vivisection on me. But the feeling one has, when pain is the worst and night is the darkest, of anger, even towards God. The frustrated musing of why God doesn't DO something. I've been there. And I might be there again.

I'm going to change the subject here, and rather abruptly. I just brought Lewis in to sort of "set the stage." I hope you'll see a connection, however vague, as I go along.


I believe that if we believe in Jesus, when we die, we go to be with Him. And I believe there will be a day when God Himself speaks His evaluation on our life. And what we have done with it that pleases Him. Steve and I were talking one night about Joel's life, and how little it appears he can do with his. It doesn't seem like much, on the outside. What words of approval could God say?

Despite this, I think that when Joel gets to heaven, he will hear these words "Well done, good and faithful servant." I think God is going to tell him, "You were faithful over a few things... Enter into the joy of your lord."


Maybe it sounds strange to say that Joel has been a faithful servant. For Joel can not do grand things on a grand scale. He'll never write a book that helps people find truth. He'll never be a doctor helping people in third world countries. He can't donate money to help people, or be a counselor. Or even live a quiet life of great generosity and kindness.

What Joel does do though, is teach me. Maybe that doesn't seem like much, given the lack of progress his student makes. His pupil is a bit stubborn, slow to learn and change at times. These lessons might seem like very small things. But I think they have done something to me.


I greatly hope and wish to make these lessons count for something. I don't aspire myself to "grand" things, but I hope that I can use what I learn from Joel to change things somewhere for someone. And I think that when I learn something from Joel, and put it into practice, that he has a share in that. So that if I have learned any compassion or generosity from Joel, and given it to someone else, Joel too has a part in that.


You must wonder where all this is going. First talking about doubts of faith. Then talking about what we accomplish with our lives. What connection?

One of the things Joel has been teaching me is about trust. It is simple, really. Joel trusts me, absolutely. Which I find pretty amazing.

I didn't always feel this trust. Back in August when all he seemed to do was cry, or even scream, it seemed I could not offer any comfort. I even started to doubt if Joel really connected to me as his mother...


That was really the situation, and not the relationship. Exhaustion and grief on my part, and Joel just was in too much pain/discomfort for me to see the effect my presence might have had on him.


I can see the trust now though. It humbles me, the trust Joel places in me.

I used to sort of worry, when I was present to comfort him through something painful or unpleasant. Like a needle or IV. I thought "Man, he must just think I'm causing him pain, or allowing it, and WHY?? He must be thinking "WHY mommy, WHY?? Why don't you STOP this?"

I was even anxious that maybe my presence would not be comforting anymore after a time. How could he feel safe with me, when I was not only powerless to stop his suffering, but even at times, the cause? Would I not become associated with the pain? Would Joel wonder if I were a vivisectionist at times?

This is not the case though. It seems all those long nights that I spent rocking him. The ones where I held him against my chest as he slept fitfully. The days where I tried everything, singing, bouncing, cuddling, patting, everything to calm him, to get him to sleep for just 15 minutes. It seems that all those times spoke somehow to his heart all along.

For Joel trusts me. He finds comfort in my arms. There may be pokes, or strange people prodding him. He might feel sick. But it seems my presence is always a comfort. He calms for me at times I know he'd calm for no one else, even Steve (whom he does also love and trust). He sleeps in perfect peace when I hold him.

Maybe this sounds like "mommy mumbo-jumbo" to you. And I'm not saying he doesn't still cry at times, if he is feeling badly. I'm just saying I can tell I make a difference. I can tell he feels safer, more peaceful when I'm around. It's not "mommy mumbo-jumbo," believe what you will. I can really read the trust in his face.

And that blows me away. How can he read my heart so well? In circumstances like his, I would question. I would doubt. But he holds faith with me. I'm his mother. He doesn't look at his circumstances, he looks at my heart, and sees my love demonstrated.

I'm just a human mother. I make mistakes and I'm even selfish sometimes. Yet Joel trusts me completely. Sometimes I look into his little face and I am overwhelmed by it.

And he teaches me about trust. For God is my parent too. And He is more than human. Can I look past the circumstances? Can I read God's heart? Can I hold to His love demonstrated even when things get painful and difficult? Will I still find peace in His presence when pain surrounds me?

It is beyond me to understand the situation of my life right now. Just like it is beyond Joel to understand about g-tube surgeries, or IVs, or why tummy aches don't go away immediately when I hold him. But he trusts me still. Will I trust God? It's really not a rhetorical question for me. I really wonder about this. The rubber and the road fast approach one another.

I'm going to be honest through this. Like Lewis. I don't want to make my faith sound better than it is. I'm far from perfect. Maybe the sort of trust that Joel has shown me will prove beyond my grasp at times. At times I might be as angry with God as Lewis admits he was. Doubt and trust may war with each other. I hope I will learn from my teacher.

Thank you Joel, for teaching me about trust and honouring me with yours. I'm glad God gave me such an excellent teacher and I'm going practice learning this lesson. Because one day if God can say to me "You have kept faith like a child, even in the storm," I know He's going to turn to you and say "You taught her well with your example."

For now, I'm going to try to be honest and sincere about where I am at, even when it's not that great. And I'm going to remember God is my Father, and read His heart, like Joel reads mine. God willing, I'll be trusting enough just to rest in His arms, when the night comes.