Navigating the Medical System Part Three

Whew. What a week. And it is only Wednesday. I have just been going back and forth between my Dad and my little Joel. I am trapped between two generations. I am simultaneously losing part of my past and part of my future.

I am hoping that God will still grant my father a few more years. If that does happen, I will know it was utterly God's mercy. We did have one encouragement today. Though my dad's white blood cell count has been no higher than 0.2 for almost three weeks, today he somehow managed to hit o.3. That isn't much considering where they need to go. But I was beginning to think they truly would never go up at all. So I am praying they will still go up tomorrow.

Today was another frustrating day at the hospital. And so I thought it would be the time to write another blog about what it is like to try and figure out the medical system. Here are some examples of the sorts of things that make you feel that you are trying to balance on a wall of Jello.

1. Here is one thing I know: Dexamethazone helps Joel breathe much better. Sound simple? Well, Dexamethazone reduces swelling, says respiralogy. So this means that Joel's problem is swelling, and CPAP will not help him. No, says ENT (and a few other docs), Dex can help Joel's breathing because it is the "Red Bull" of the medical world, it just pumps him up. Swelling is not really the problem. Respiralogy does not want to give me a CPAP. ENT does not want me to lobby for a risky tonsil removal. Apparently medicine is NOT an exact science. Do they sometimes "skew" the data to fit their ideas? I'd like to say no, but they are human, and I think they sincerely believe they don't. But this is just one example where the info "fits" the doctor's angle... whether or not they are conscious they do it.

2. Everyone agreed that Joel COULD have an MRI. It was not "unreasonable" to have one done on a yearly sort of basis to check the progress of his disease. It was NOT necessary (as in, it wouldn't affect his treatment), but there was no reason NOT to do it. So it was ok for him to get one, in order to give us, the parents, a tool to make our decisions.

So, the ward doctor agreed he could have one. And the metabolic doctor. And the neurologist. Yes, they all agreed. We'll make sure one is done.

And then no one ordered it. So 6 weeks later, I'm wondering where my letter is, telling me I'm in the line up somewhere...

3. So who do I call about this MRI?? Which doctor would have done it? And whose number is handy? Well, there is a general consensus among doctors that our Ped should be the general "manager" of all things medical. The hub, from which all spokes of the wheel can be gotten to. Unfortunetely, our Ped seems not to have gotten the memo. But I call him. And ask him if an MRI has been ordered. Because at this time I still naively think that this sort of info is sent to him in a memo, which he is aware of, or can easily access.

I know better now. No, the doc says. He has no idea. Why don't I just call MRI and ask them? Okaaaaaaay. I guess I can. So I do. Which is when they tell me what I already was pretty sure they would say: No, there is no MRI ordered.

So I can call my ped back and now I ask him if he could order one for me. To his credit, he does, at least, order it for me, instead of passing me on to my neurologist. Because I appreciate this, I try not to be too frustrated about how many times he has asked me to do my own "research" on Joel's medical stuff (like call another doctor re: doses on a med, or call the eye doctor to schedule eye surgery!).

Whoa! I was on such a roll there, I suddenly had story after story to share. But I think you get the idea. And I think I have been negative enough. It would be so easy, on a day like today, to be really negative about everything...

Because today was a discouraging day. And it wasn't all the doctor, though she might not have helped. So I don't want to leave you with a bitter taste in your mouth. For every bad story, I do have a good one.

So remember that the medical world is still filled with great people who do a wonderful job. In fact, I think you can see how even the great people can get caught up in this "system" and that is where it gets less than wonderful. After all, we are all only people, no matter what comes in front of, or after, our name.

And, somebody made my day yesterday or today. Some wonderful person came along and LEFT A BOX OF NICE KLEENEX! I don't know who it was! But may God bless you, and may you never be in hospital yourself with out a box of beautiful, soft tissue!!

Angel

I don't feel like writing this blog right NOW, but I am worried it will just fade out of my head completely and won't get written. Sometimes my blogs just bounce around in my head forever until I finally get them out. Other times they seem like dreams that fade away as you wake up, if you don't tell someone right away, you just can't really visualize it anymore.

And I don't want to lose this one. But even now, I don't remember "where to start."

So I'm going to start with angels. Some of the parents who have lost their children refer to the day they died as their "angel day." Well, I understand what they mean by that, and I don't want to take that away from them. I know they mean the day their precious child went to be with God and I have no doubt that child is very precious and special to God. (Matt 18:1-5, 10)

But I don't think I'm going to call the day that Joel dies his "angel day." Because there are two things that come to my mind when I think of "angels." One is the picture of fluffy clouds and wings or halos, like the "Philly" cream cheese commercials try to capitalize on. And the other is the underlying meaning of the word that is "angel" in the Bible. An angel is a special messenger from God.

And so when I think of an "angel day," it makes me smile a bit, because to me, Joel is already an angel. No halo or fluffy wings. But it seems to me that Joel has been in his own special way, bringing me messages from God.

Before you think I have flipped my lid, let me explain. This is why I didn't know where to start. Sometimes these ideas of mine seem like a dream, and it is hard to really find the beginning or end, but somehow they have left me with such a clear impression and I want to be able to describe it to you.

Today we had our church picnic. And our pastor was talking about how nature reveals God's character, aspects of His own nature. And I was thinking again of Joel. It must seem that I just have Joel, Joel, Joel on the brain at all times. In a sense I do. And absolutely any time I think of God, Joel is in there. Or maybe it is vice versa. I can't tell anymore. Because God has always used these times of turmoil in my life to teach me stuff. Or talk to me. I am not sure how to describe this, but to say that Joel is the catalyst. So instead of a small reaction, you get a big bang. Is this making sense? Instead of a tiny experience of learning patience - BOOM! Explosion lesson of learning patience.

So, picking my thread back up, I was thinking about God revealed in nature. I was thinking about canyons, and waterfalls, and mountains and valleys. I spent some times in the mountains and on the West Coast. And I was thinking about MAJESTY. I was thinking about the feelings of awe and majesty that these beauties in nature stir in me. Think about a waterfall. What is it really? Rocks. Water. Maybe some trees or ferns or moss to green it up. If you picture a rock, I doubt you feel awe. And if you think of water, you might feel thirsty, but where is the majesty located?? Or even ferns. Nice, but I'm not feeling it much. But if you picture that waterfall - AMAZING! (sorry, feeling big emotions here gets me all "capitalization crazy.")

Just like if you picture paints, a canvas and a paintbrush, you won't get much, eh? But if you view an amazing painting, it can evoke all sorts of feelings in you.

Because of the touch of an artist. And this is the oomph of the waterfall. You can't put your finger on it, or explain it, but when you see it, you know!!! There is a part in me that responds to majesty, to beauty, to the art of nature. I think it is a part that God put there, like the interlock in a puzzle. And then He made waterfalls and click! That waterfall fits into the part of me receptive to God's majesty. The part of God that is beautiful and majestic and awe-inspiring! The waterfall awakens me to that side of God, and that side of my own nature which hungers after it. The hunger has awakened in me and I desire sunsets, roses, waterfalls, rainbows, ocean depths. And underneath it, a greater hunger. A hunger for God Himself, the creator of the beautiful and majestic and The Beautiful and Majestic Himself.

Now you are wondering how Joel comes into this. Well, I was trying to explain the other day how Joel had taught me things about the value of being a human, about what was important in life, about seeing people in a different way. And it was as hard to explain as it is to capture that illusive quality that we call "beauty" or "majesty" or "art." We know it when we see it, but it is hard to find words that can possible contain a description of our meaning.

It was like trying to tell someone who is looking at a pile of rocks, a bowl of water, and a fern that these ingredients can really speak to your heart and reveal something amazing, you know?

But Joel is a communication to me about my creator. He's a different sort of communication from a waterfall. Less grand, and much more personal. He is my "angel" of sorts, he is a vessel carrying a message. A truth to be seen with the heart, though hard to capture in words.

This, my friend Tracy, is what I think you mean when you said that Graham and Joel WERE the greater good. They are the waterfall and sunset people. They can reveal truths to us, if we open our hearts. They, like our conscience, call us to be better people.

Some people can not receive this meaning or message. Not everyone who sees a waterfall sees the majesty. Some only see the dollar signs. And not everyone who looks at Joel will see the message in him and in his life. But if you look with your heart and not your eyes, you can see it. The more I practice seeing the beautiful and majestic, the better I am at receiving wonder and awe. And the more I practice seeing Joel, the better I see the compassion and love and joy of the Creator.

I understand God's love more, I feel the awe of existence more. I don't know, the English language fails me, there are not words for this...

And so I simply say that Joel has helped me to realize a lot of things about what it means to be human and loved by God. And about what is valuable in life.

I will practice awe and reverence by seeing nature and worshiping God. And I will practice love and joy by seeing Joel and understanding more of God's heart.

(I'm going to stop there, because that is the part of this whole idea that is connected to Joel. But not before I make one more note. As much as I love Joel, and as much as he has taught me, I want to say that no one has revealed God's nature to me the way that Jesus has. Some day maybe I'll write a blog about Jesus, because he's more than blog-worthy. As an understatement. I'd love to share some beautiful stuff about him. But this is not that blog.)

So I will leave you with this challenge. Go out and experience some awe, by looking at whatever awakens your hunger for beauty and majesty. And think about it all for awhile. Then go and spend some time with someone who is physically weak or broken. Really look at them. And maybe something else will awaken in you, something that enriches your life and opens your heart.

Roses

I had a few blogs in my head, but now I find I'm having a hard time settling down to them. It's been a tough slog the past couple of weeks, though I have been trying "not to notice." My dad has not been doing very well. The first time he went through chemo, it took three days for his blood counts to start going up.

It is now day 17 or 18 and his blood counts are still not up. It's been almost that long since he has taken any food, and most of that time he has been lucky if he can have ice chips. He's had a fever off and on, and today we found out (finally!) the source of his infection, he has a perforated colon. He has spent two weeks in bed, using the "port-a-potty" and the big excitement of the day is sitting up for 10 minutes a few times a day. His mouth is constantly dry and he sleeps most of the day. He manages a few sentences at at time, and if he's up to it he listens to music or taped sermons. And I think it is safe to say that at times he is pretty discouraged.

Now I am waiting to hear if they are going to do surgery right away (risky) or if they think they can wait a few days to see if his blood counts go up (which also has risks of course.)

When I go visit him, I'm somewhat speechless. What kind of small talk would you waste your five "good" minutes with your dad on? And what sort of meaningful talk can you have in just five minutes? I never get a moment alone with him anyway. And I refuse to resort to platitudes or things I don't mean or believe, things I can't say with 100% sincerity. So I tell him I love him.

And I tried to tell him today how much I appreciate all he is going through for us. I know that when he signed up for all the pain and trouble of chemo, it was for us. My dad is so unafraid to die. And right now, I think that at times maybe he wishes for it. That he could leave and be happy and at peace. But there I stand at his bedside with my enormous, sad eyes, silently pleading "Don't go yet. Not yet. I need you to stay and be here when Joel dies. Don't go yet. I still need you."

I'm glad I wrote my little blog about my dad when I did. Because if I had waited, I don't know if he'd ever get the chance to read it. I sure am hoping that he gets the chance to read this one. And that I get to have many more talks with him, both small talk and great talk. I want to have many more days to tell him he's the greatest dad and I love him.

So this is a reminder. One of my favorite all time books is "The Little Prince." Roses are ephemeral. So are we, at least in this place and dimension. Roses bloom their hearts out and provide those around them with the sweet smell of their love. Let's bloom our hearts out too, without reservation and without holding back.

Comments

Ok, it finally happened. I don't know if I should be flattered or annoyed, but I am leaning towards annoyed.

Someone left me an, um, let's just say an inappropriate comment. I'm going to be tactful, and try not to write any other judgements on it than that, which is hard to do when you are annoyed. But I must admit, I am. The blog of a mom with a little boy who is terminally ill should be sort of sacrosanct from an intrusion of someone with their own, completely unrelated and unintelligble adgenda, no???

So, two things: number one, unfortunately I felt compelled to put a preview setting on my comments. You can still comment freely, but it will not show up until I get to read the comments and approve them first.

Number two: please, serious blog readers, continue to comment. I welcome your comments. I love your comments. The preview setting is not to keep you out. I just don't want anyone else to stumble on anything annoying either. The only comments I would ever block are those that are offensive, or just plain gibberish, ok? I think you know what I mean.

So if you are reading this, please cheer me up. Let me know that good and rational and caring people are reading this. Leave me a nice comment. :)

Navigating the Medical System Part Two: More on Medical Reports

I sort of got the feeling that maybe a few people might think I was being a bit unfair to the poor doctor whose medical report I commented on last blog. And I found I had more to say. So here I go. I never said I wasn't long-winded. But that is ok in a blog. Not in a medical report.

Now, nobody like a complainer. So I have always hesitated to let out some of my feelings or experiences here in medical land. I don't want to seem ungrateful, because I am very grateful to the good doctors and other medical people. And it is easier to write about all the negative stuff, and miss the positive, and I don't want to do that either. And I hope you take what I write with a grain of salt. I'm a natural dramatist, with a bit of a wacky sense of humour, so not everything I write is completely serious, even when I am upset or angry. Keep that in mind.

Still, I can't help feeling that being a bit more transparent and honest might help someone else out there. I'm always torn between that and "If you can't say something nice, don't say anything at all." Which is why I always try to at least include the nice and positive, even if I am blowing off steam. Because there always is lot of nice and positive stuff as well.

So remember, what ever my feelings about medical reports, I still do love all the doctors I have right now. And I think they are good at what they do, and I think they even care about Joel too.

It is just that medical reports are a funny thing, a part of that vast "system" that I commented on a couple blogs ago. Not everybody writes em, and for sure barely anybody reads em. Seriously. I can't help but wonder, at times, what they are for.

For example: every time I go to see my eye doctor or my orthopedic doctor, they send out a report. However, not once has either my metabolic doctor or my neurologist sent out a report.

They do not seem to be "mandatory," which is why I feel sort of more free to take exception to what is in them. That might be a bit unfair, as if you are diligent enough to go the extra step to send a report, you might like to think I'd appreciate that in itself and not get critical. To which I could reply that anything worth doing is worth doing well, no?

But now I have to be fair to myself, and say that I don't really feel critical about it. That is a cerebral sort of reaction, isn't it? And what I was writing about was a visceral, gut-type reaction. Less thinking, and more feeling. I just wanted to share how those darned reports made me feel. And they tend to make me feel BAD. Like when you get a bad report card at school.

One of the issues I take with these medical reports is when they have "window dressing" in them. Useless filler. The report I mentioned last blog was from Joel's orthopedic doctor. All I needed it to say was "Joel doesn't need orthos at this time as he is still quite flexible, but he may need them in the future as his ankles show signs of stiffening. We adjusted his bath chair and are looking into options for a swing." And that is pretty much it. I don't care how much medical jargon he uses, and I expect him to use it. But the information conveyed should sort of be what is necessary.

And let's cut out all the filler, like speculations on whether Joel has Zellweger Syndrome, or NALD. Or at least leave that for my metabolic specialist. Who doesn't write reports and absolutely refuses to speculate on the Zellweger/NALD/IRD issue, even in person.

And here is my advice for any medical "newbies." I was very naive when I started this journey with Joel. When I was asked who to send any reports to, I eagerly filled in the names of Joel's every doctor. Good, I thought. Everyone has the info and they are all up to date.

Maybe you are less naive than I. Maybe you already realize that busy doctors with hundreds or even thousands of patients do not even glance at these reports. If you don't already realize this, then trust me, they don't.

(By the way, please also realize that I am not finding fault with the doctors on this one. I understand that if they actually spend good time with their patients they just can't afford to read the 500 reports that cross their desk each week.)

What actually happens is that there is a nurse or medical assistant who read through all the mail. She or he files it appropriately. If there is some super important info, like the patient has either died, or been miraculously healed, he/she may flag the memo. Or more likely, just tell the doctor the pertinent facts.

And in my experience with doctors, I can tell you of one exception to this rule. Oddly enough, Joel's hematologist (of all people!) either reads the reports as they come in and then somehow remembers them, or more likely, actually reviews Joel's file for any new info right before his appointment.

I came in to an appointment with him about three months after the eye doctor has sent his report, and the blessed man made a comment about Joel's progress in his visual skills. I almost tripped over my jaw and I fumbled to find an appropriate response to his comment.

This is one reason why I love Joel's hematologist. I will forgive that man many things just for showing that one time that he took the time to read Joel's info. And if you find a doctor like this, hold on to them. Maybe send them Christmas cards. Or bake em cookies. But appreciate them.

It really helps me now that I have learned all this. I have more realistic expectations, and if there is anything important for them to know from a report somewhere, I try to remember to tell them in person when I see them.

But it sort of makes me wonder who these reports are really for? I guess they are just there to pad out Joel's file? Maybe they are for me so I can keep track of things? I can tell you this, they are NOT for emergencies where the doctor can quickly check the info he wants. Because finding any info in Joel's huge file can take quite awhile, and if there is an "emergency" type situation, they are just going to come and ask me directly. Trust me. They will all think I am better than that huge, cumbersome file, and with come straight to me.

In any case, reports would be a lot more manageable if all the useless filler were left out. After all, doctors are so busy. Why not be to the point, both for the writer and the reader? Maybe if the other doctors didn't have to wade through two paragraphs to get to the point, they might read the reports that come across their desks? I'm just saying. Maybe there are three sure things, death, taxes, and medical reports. But maybe medical reports could be made more palatable for me, the primary reader. Wouldn't I love to get a hand on that file, go through it with a red pen and.... Hee hee hee. Once a teacher, always a teacher!

Which leads me to the other doctor who writes these reports. I didn't say anything about his reports. They usually have a bit of "filler" in them too. And every now and then, maybe they say something in a way that I don't absolutely love, like the Zellweger's thing. But I will forgive my eye doctor quite a bit here. Because every visit he ends with a little tape recorder where he actually dictates the basics of his letter right there in front of me. And sometimes even looks up and checks with me for clarification or to be sure he got it right. Can you imagine? Pretty freakin fantastic!!!!

I sure don't expect any other doctor to do that. But I absolutely applaud that excellence! Wow. How kind, how considerate, talk about going the second mile, to make sure that I am party to what goes in his letters, to try and minimize any misunderstandings or little "surprises." In fact, maybe I should put his name, along with Joel's hematologist, in for doctor of the year.

Stigmata

Hmmmm. I bet you think that has some religious connotation here, right? (I'm talking about the title, check the sidebar if you missed it.) Funny thing, that word. Showed up in a medical report for Joel. I didn't even know it was a medical word.

If you look it up in the dictionary, (A regular one, not a medical one.) you will see it under "stigma." Yup. Under stigma. And the first meaning of stigma is "shame or disgrace." Talk about connotations!

I try not to make too much of these reports, with regard to the words used, or how they make me feel. I get over them pretty quickly, for the most part. Still, they...rankle?

Yes, I want to receive these reports. I don't want anyone else to have access to any info that I don't have. In the interests of equality, fairness, and leveling the playing field.

And I understand that doctors feel the need to put in all their observations and they have to put it in medical terms, etc, etc. And medical terms are better than just using street language, of course. I prefer that, I suppose.

But these reports rankle. They are troublesome. And sometimes they sort of hurt.

Like the one I receive last week. Once again, done up by a doctor who is really great in person. Kind, relaxed, compassionate and caring. Just the kind of doctor I am relieve to see.

The report, not so much. For one thing, it said that Joel was most consistent with the "Zellweger's syndrome" end of the spectrum. That really gets my ire up. First of all, I disagree with it on a few levels. I hate putting Joel in a "box" on the spectrum when it is a SPECTRUM. Which means no one agrees at where to put the line because there is no clear line. Second of all, even if you did put Joel in a box, I think he's already passed the "line" for Zellwegers, as he is still alive at almost two years of age.

And the last, and largest problem I have with it is that I can not help but feel that medical staff treat my son differently when they hear it. They do. Of course. Because to say that Joel has Zellweger's Syndrome means that he is really going to die at any moment, but before he gets too much past two years of age. Look it up. I have never found a life expectancy for Zellwegers that went over two years of age.

I admit Joel could die in the next two months. But he could still be alive two years from now. And we really can't say. So I hate it that they pin the title on him, and then everyone treats him like he is on his very last legs. Maybe he is. But since we don't know for sure, I'd rather they treated him like he was going to live awhile yet. But now that report is there with the diagnosis stuck in once again for all eternity!

And here is the other hard part about the report. I'll just quote it. "Typical stigmata of the Zellweger spectrum syndrome with high forehead and hypotonia, flat face...facial diplegia."

Admission: I have only a vague idea about what some of those words mean. But they make me feel both sad and annoyed. Why must that get pointed out? Does it matter at all? No. We already have our diagnosis, and how Joel looks really has no importance on his health at all. (by the way, even my spell check was baffled by "hypotonia" and "diplegia.")

It is a doctor thing, this need to put all observations into a report. I've seen these and similar words before, on other reports. But they are... ugly. Aren't they?

Because I think Joel has a beautiful face. I think he has a cute little face. I think if you were not looking at him "medically" you would never notice a high forehead, or a flat face. Maybe that is just a mother's love. But still. Take a look at his video from several blogs back and tell me. Isn't he really just the cutest little thing?

I wonder, now, how mother's of children with Down's Syndrome feel. Do they have to read "Mongoloid features" in every single report they read? I wonder if any of them ever take that report and hold it over the sink while they take a match to it? Kind of like I'd like to do to my report right now, but I'd never dare do with any medical type document!

Because final diagnosis is never based on anything like facial features. You need to put real science behind it, and anything as vague and subjective as how someone looks is just not valid. So why mention it over and over?

I mean, can you imagine if it happened to all of us? I go in for my annual doctor's check up and my doctor fills out her report. And in it I find in medical language noting the unusual dent in the back of my head? Or that I have a square jaw? Can you imagine?

How about "Patient exhibits hair loss correlating to age." Or "Skin shows loss of elasticity common to those undergoing menopause." How about "He has an irregularity in the symmetry of his nasal bridge that correlates to previous injury?" Or "eyebrows show asymmetry due to over plucking?" I'd give more examples, but I'm already stretching myself trying to even sound medical in my descriptions.

But I hope you get my point. What if every time we went to the doctor, they noted our faces and commented on any points that did not fit the "normal" type of face? Don't we all have those? How would we feel reading about our high forheads, or big noses? What about our wrinkles and warts? That our eyes are small and close together? Or that our lips are thin? Can you imagine?

I'm glad they used Joel's features in the beginning, to help point them in the right direction for tests. I just don't see why they have to keep pointing them out, as if a hideous deformity were the real problem Joel has. It's not like they are plastic surgeons who are planning to correct something. So why does it matter?

And why do you need to put poke that little pin into my heart, that little shock of pain, every time I see that you have notice that something about Joel's looks doesn't jive with "normal?"

I really wish that they could start their reports like this: "Joel is a sweet little boy with long eyelashes and a button nose. He is very good-natured, and was patient with me while I handled him." It's not very medical and it sure is subjective. But it would serve a purpose. It would make me, his mom, feel good. And it would show that during the appointment you saw a little person, instead of a patient.

Which I knew the good doctor did. Like I said, in person: fabulous! Great bedside manner. Maybe I should be the person to edit the reports, though. Personality: A+. Reporting: D- (It's the teacher in me.)

So I thought of something I'd like to do. I can't take a match to the report. (Ok, I can, but it might not be very wise, and there would still be copies in other places.) But I can do something else. I'm going to put together (when I have time) a blog page 'tribute' to Joel.

I don't have to wait until he is gone to do this. I just want to celebrate how cute and sweet my little boy is. So I'm going to try and find the best pictures I can, and maybe write some stuff to go with, and make up my own report on Joel. And replace some of those words from that report with what I see, when I look at my boy.

So that the 'stigma' has faded out of my mind and heart. And what I remember instead are the marks of love that are being etched every day by Jesus. Not visible in a physical manifestation. Rather the stigmata that are only visible in our hearts, as God etches His marks. Through pain, compassion. Through sadness, patience and hope. That our souls might have the privilege of growing like Jesus.

Navigating the Medical System

My little Oxford dictionary says a system is a "complex whole; set of connected things or parts." It also says that 'the system' is the "prevailing political or social order, esp. seen as oppressive."
Hmmm. Complex: check. Set of connected parts: check. Prevailing social order: check. Seen as oppressive: well, sometimes, right? Check. So I think we can safely say we have a "Medical System!"

Yesterday I had an interview to complete a study that our family has been in. One of the questions I was asked was "What do families mean when they talk about The Medical System?" (this is not an exact quote, just the main idea of the question.) That question really made me smile. I knew right away what the other parents were referring too!

I think the most frustrating thing about this "system" is that medical personnel seem to think it is transparent, but I am glad to find out that I am not the only parent to find it opaque. As in, more like a wall than a window. And then I just realized that I had to write a few blogs about this whole thing after all. I'm not really sure I have learned that much myself. I still feel pretty much totally lost and completely clueless as I muck along feeling my way in the dark. But for what it is worth, I'll write about some of my less than stellar experiences and maybe I'll find a nugget or two in there. Maybe?

I don't like to complain about my experiences in this medical world too much, or in any sort of "public" way. I do have a few blogs about my experiences in the medical world. If I didn't, I wouldn't be being transparent myself, for this is the world of Joel. But I really try, by and large, to stay more positive about it all for several reasons.

First of all: doctors and receptionists for doctors and everyone in between are first and foremost people. Just like me. So I know that they make mistakes, they have bad days, and sometimes they might be so immersed in their internal landscape that they really can't think about what is going on in my personal life. Just like me. I try not to hold anything against someone else that I know I myself may at one time be guilty of. And they are human beings, for all that they are in a profession known for it's compassion. None of us get compassion perfectly, day after day, year after year, either.

Second of all: these are the people I have to work with. And just like with your spouse, it is best not to go around complaining about them to family, in-laws, and friends, no matter what they are guilty of. You still need to work with them, and any negative feelings left hanging around in the environment will only make that harder. Best to deal with these situations quickly and try and move on with a positive attitude. Though I do have some friends that do hear my venting from time to time, as well as family members, I try and keep the griping to a minimum and remain positive about the people that I am "married" to for the duration of Joel's life, "til death do us part." Literally.

And these things really can come back and bite you in the butt.

(I'm going to relate some stories in a little "blog series" with names omitted to protect both guilty and innocent. Because I want to attach this disclaimer, and it is an important one: If I had met any doctors who truly were terrible doctors, the kind that would put your life in danger due to negligence or ignorance, I'd warn you about those people. But not once in the past two years have I met someone like that. These are just people who sometimes don't get how to help me quite right. I can forgive them for that one. )

For example, Steve and I had a metabolic specialist who was a nice person, but very busy. After one appointment where I came in and she breezed through without answering any of my questions because she was too far behind, but I was welcome to schedule a new appointment for my questions, whew - I just had enough. I asked to be switched to a different specialist. I tried to do this in a kind and professional manner. She is a good doctor in her field, but just was not able to do what I needed her to do. Fast forward about a year.

Now I am talking to a room of doctors about Joel possibly needing his tonsils out. And wondering if he did, if there was some way they could put him at the front of the line for the surgery, as waiting the usual six months would mean that the surgery would just be getting more risky as Joel's condition deteriorates. Guess who is the head of this department, the name they give me as the person in charge of ok-ing decisions like this? Yup. Same metabolic specialist. Doctors can wear more than one hat. And they can be in charge of a lot of things you don't know about! (Which is why this doctor was too busy for me!)

So now I am very glad that I did not send any nasty letters about this doctor. I am glad I tried to be nice. I am hoping that this doctor has no hard feelings about how I switched specialists. I am hoping...

You see? So first rule of navigating The Medical System is: PLAY NICE!! Seriously. Don't point fingers, get angry or shout. You seriously have to suck it all up and really be the adult here, despite the high emotions of the situation. (And believe me, I totally understand about the high emotional state these things can bring you to.) You have to be very careful about "tattletaling" (by which I mean trying to lodge a complaint, or telling other medical staff what a doofus your doctor is.) You really can't afford to burn any bridges by any temper tantrum type behavior.

It is a system, and even perhaps a political and social one. It's not like Burger King. You can't get fed up one day and start shouting and then march out and just take your business elsewhere. At least, not unless you are willing to fly out to another city, or country, anyway. Children's Hospital isn't that big. The doctor's know each other. It is a system of CONNECTED parts. The last thing you want is to have a note in your file warning that you tend to be a hot-head or fly off the handle.

Of course, it is your right to get a second opinion, or to switch doctors. It is just best to do so in a calm manner, with good grace and even a smile. No hard feelings.

I think most of us parents realize this. And possibly that is one of the things that frustrate us. In our times of crisis, when you feel your world is blown apart, you sort of can't help feeling that the people around you who are supposed to help your family will be able to do that. Or at least understand that if they can't help you, you are going to "lose it!" Because it is taking every effort just to keep from blowing apart yourself.

But though medical staff may realize this, and maybe a few of them might possess that super human ability not to take your outburst personally because they understand this, I really don't want to risk it myself. Negative emotions tend to reverberate for awhile. I don't want to put anyone involved in Joel's care in a state where the majority of their energy is being used to make that super human effort not to take things personally. I'd rather leave more positive feelings there, so that they can put their energy into other channels.

But it can be difficult. That is why my friends or family sometimes get to hear a long story about it later on, complete with the funny quips I wish I had thought of/had the guts to say and all the hyperbole I want to really lay it on thick. At the time I might have been close to tears. But later on, at home, my sense of black humour comes out as I retell the story, and I might even give a dark laugh. My advice? Count to ten and all the while tell yourself about how later on, in private, you are going to really let go, and tell a close friend your medical horror story.

In fact, it is just another exhausting part of taking care of a chronically ill child. So I could sure appreciate hearing that "The System" was something many other parents mentioned in the study. It was nice to know I'm not alone in it. As I wander through the fun house mirror maze, I'll have to start banging on the walls and calling out "Anyone else lost in here??"

personal story of a parent of a child with fatal genetic disorders

I'm titling my blog this way as a sort of "call out" for anyone out there in cyberspace looking to connect to someone else going through the impending loss of their child. If this is the first time you are visiting this blog: WELCOME! Please make yourself at home here, and I hope you find some things that encourage you or make you cry, but in a good way.

If you happened on my blog, and you are also going through a similar experience: if your child is chronically ill, if your child is terminally ill, or if you have recently lost a child, I would love to connect with you through this blog. Please feel free to read this blog as you wish, and I would love to hear a comment from you, even just telling me your first name and sharing a bit about your situation if you feel comfortable doing so.

If you are not "new" to this blog, let me explain. I discovered something about blogs, and mine in particular. I'll spare you all the details, cause they are pretty boring. Main thing is, (DUH - I am obviously NOT very good with all things electronic cause I didn't know this) I found out that you can type in searches on Google, and if a title of one of my blogs contains your search words, you may get my blog pulled up with the other sites you find.

I must reiterate - I am so naive! I didn't realize this. Or expect that a tiny little blog like mine could ever be pulled up in a Goggle search. Well, normally it isn't. I mean, it might be, but sort of kinda like when you put in a search for something and find 1-7,539 searches. Then if you actually went through the first 7,538 sites pulled up, there you would find me. That sort of thing. I tried it myself, and most of my blog titles just were not pulled up when I put in a search.

But I did find out that "Hospital Survival Kit" has generated a lot of hits. Because if you type this one into a Google search, there I am in the top five or six! I guess not that many sites deal with hospital survival kits. I'm guessing that the dads who were trying to figure out what to take to the hospital last minute when their wife went into labour might have been a bit disappointed with my site, but hopefully someone out there found something on it of some use.

This is a long story, so I will try to get to the point. First of all, I was sort of excited to see that one of my blogs actually might have covered something that people out there in general wanted to know, something that not too many other people had thought to put out there. In other words, it felt nice to think my blog might have had a brief and glorious moment of usefulness.

Second of all, I thought maybe I had discovered a possible tool to reach out and connect to other people. People who might be going through somewhat the same thing. And connecting to other people is something that I would really like to do. This blog has already connected me to some really super amazing people, and I am really grateful for that. People like you, Christina, I know you are reading this, and it is an encouragement to me that you do so, and that we share things in common. And friends from my support group. I have some loyal readers there, and I sure appreciate them. And there are those "background readers" who don't comment, but I know that a friend of a friend connected you, or something like that, and you are welcome too. I sure would love to connect with some more people who are sharing this painful and horrible journey. I'd love to be some sort of encouragement, some sort of support, or friend. And all that good stuff.

So every now and then I'm going to put out a "call out." I'm going to write a little blog with a name that might help people looking to connect to find this blog. And have a little welcome message. I won't bother to post an announcement on my Facebook, for those of you who get here from there, as you obviously already know about this blog and why bore you? But you can, of course, still read the messages if you want to, or skip em too. Whichever you prefer.

Maybe I won't get any hits from any of my titles. Certainly, there is a lot of info out there if you type in anything about loss or death, etc. And my blog really is very small potatoes. But if I even make one connection, it would be worth it for me. So please, humour me on this one! And if this is your first time reading, I'd love you to "sign a guestbook" by leaving a note in my comments. (even just saying you were just visiting)

Empty Vessel

Things have been rough for my father in chemo land this week. He's gotten some form of colitis from his chemo and been on a solid diet of ice chips. His heart enlarged and they put him on meds for that which seem to have helped. And they think he may have a blood infection caused by the colitis. So hopefully his blood counts go up in the next day or two so he can fight it off himself. Right now he is on a lot of meds. That is to be expected with chemo, eh? Not exactly a day at the zoo, that chemo.

And we haven't been able to visit for awhile. Steve got the stomach flu, and then Caeden. Who next?? Oh please, not Joel!!

And I am afraid this email is going to take a very morbid sort of turn. So this is a warning. Seriously. I know warning you away from reading it will make some of you out there want to read it all the more. So be it. The people I'm saying this to are the ones I am worried about hurting by writing all this stuff, and putting you in a bad place with everything. I'm writing here about what will happen when Joel dies.

Cause I have been thinking about death related stuff, and I am going to take this opportunity to explore some thoughts and feelings. In particular, thoughts and feelings about, well... about how am I ever going to let someone take Joel's body away and bury it in the ground? If that is going to bother you, then maybe skip this blog. This might get a bit graphic, but I'm still sort of trying to "protect" you by using more euphemisms. To bad the realities of life never come to us in euphemisms...

I know that Joel's body is just the empty vessel where the "real him" lives. But I have gotten really attached to that little container. It is the connection I have with him. And I love his little person.

I hold him. And I just cuddle him close to me. I kiss his little temple and I stroke his soft, soft cheek. He's got these glorious high cheekbones, just tiny and fragile, and I can feel them when I kiss him on the cheek. Amazing. Beautiful and fragile, like baby birds.

His tiny little feet are so adorable. They tend to curve inward due to his muscles being strongest on the inside. But they are so cute. Just like his little hands. He can't move his arms or wrists like a healthy child would, but it feels so wonderful when his little fingers wrap around mine. Or when he struggles to reach them up towards me.

His soft, wavy hair. His big toothless grin. (yup, tooth is just sitting there. I can feel the sharp edge, but it doesn't seem inclined to move further.) His tiny little nose. His blue eyes rolling around all over as he is locating the sound of a voice, and then straining in that direction, though he can't really see...

It is hard for us to separate the body from the spirit. Sure, I know that the body itself is not really Joel. Not his essence, not his soul. But it is where he lives, and I love it.

So it troubles me. The thought that one day I might be calling a funeral home to come and pick it up to get it ready for burial. And then let it get put into the ground. When I think about it, I just want to fight it. And then this helplessness rolls over me. For I can't fight death on this one.

I know it is just his body, and he'll get another, better one someday. And, of course, once he is dead there are other factors that will be very convincing of the necessity to let go of his body.

Which is really even worse to think about. Death is not kind. It doesn't wait for an hour or two so you can gently get used to the fact your loved one is gone. It sets to work almost immediately on the body. You can't ignore it for long. So my last moments with Joel's tiny, sweet little person will be tainted by physical realities that refuse to be ignored. His body will start to cool and to stiffen. I can't even imagine how his beautiful eyes will look, once he has left. And other indignities...

I know that in a way, that is good, even though at the same time it all seems pretty horrific. I say that because the realities of death force us to realize that the soul has moved on. They force us to let go of that body. Otherwise, in all honestly, I'd never let his body go. It would be there, perfectly preserved, for the rest of my life. Some room in our house would be the "Joel" room, and there he'd lie. That might not be healthy...

So those "death realities" make me face that what was truly him is gone. They make me realize that I have to let go of my connection to him here on earth. I might still, at times, slip into a sort of ...hmmm.... icon-ism??? when it comes to Joel. I mean, I might take his pictures, his clothes and other things, and over time they may take on a sort of "sacred" type of meaning. They might become symbols of Joel, which over time are less and less close to the real child. This is what death does. We are separated, and it is easy to slowly let memory transform our beloved. And let objects related to them take on more meaning then they were meant to have. Think how that would happen, if I could keep his body forever.

I'm absolutely NOT saying we shouldn't keep pictures or videos, or even a special piece of clothing. I admit that I am going to. But for sure it is a good thing that I can't keep Joel's body as a type of "memento" of him. I guess you can see where I am going with this. It just wouldn't be right or healthy.

Despite the fact that I know this. And despite the fact that knowing all this might help on that terrible day. Despite all that, I think it is going to feel pretty terrible and be awfully hard to watch death stake its claim on Joel's body. To have to see that final corruption start to take hold and destroy what I love... and have to release that dear little container and watch it lowered slowly into the ground. I wonder how other parents do this? How do we let go??

While he is here, I'm going to cuddle him, and kiss him, and look at his dear, dear little face. I'm going to snuggle in close and smell that wonderful sweet smell that is him. I'm going to enjoy this connection while I have it.

And I'm sorry, but that is about as positive as I can get on this one. Though I know you have been warned many times that my purpose here is more to be honest than to be positive. So what you got today was a whole lot of honesty. Even if it was a bit grim. And maybe a bit more than you wanted. But maybe that is, in itself, positive, if it means you go find someone you love and just enjoy that physical connection with some good ole' solid affection.

An Update, and a word of Caution

My dad is starting to feel a bit better now. It was rough going for him, for a few days. Still waiting for the final results, but the prelim looks good as far as if the leukemia responded to the chemo. I sure hope so. I'd love it if my dad could get out of the hospital and if he didn't have to do another "induction" round of chemo. Those are not fun.

We brought Joel to the emerg on Sunday, but he "just" had an ear infection. So he's been on antibiotics and he was pretty happy the last couple of days. In fact, Tuesday was a really good day for me. My boys were happy. I had respite. Caeden and I played in the yard in the pool and I got to do a few other things I wanted to do. And Joel was pretty smiley.

He has a fever again today, though. Still on the antibiotics, and I'm hoping that it is not the tummy bug Steve has. I sure wish we could have a couple of disease-free months, but that just doesn't seem possible for us anymore. I hate all the sickness. It takes away our "smiley times."

I have been thinking about this blog and what will happen when Joel passes away. Then I thought, "Hey, are my blog readers in denial? They do know that one day Joel is going to die, right?" I guess that is a funny way to put it...

I just thought it might be easy to get into reading this blog and sort of forget about the reality behind it. I might have lots of warning before Joel dies. It might be years. Or it could be tomorrow. Seriously, this disease is that way. I know of children who had an observable decline and there was lots of "warning." And then I know of children who just... died.

I sort of thought I should warn you about that. I know I have written about it before. But this time I am warning YOU. One day you might read this post, and what it might be telling you is that Joel is gone. And you might be really sad. Just a warning.

I sort of felt I should say that. Like I did when we hired our respite worker. She is really great. She appears to like and care about my boys, and what more could I wish for? The first time we met her, I warned her that if she decided to take the job, she needed to be aware that one day Joel would pass away. And that might be hard on her. I felt it only fair to warn her. She was taking on a job where she might get pretty emotionally involved, and I felt it should be something she weighed when she made her decision. The death of a child you love is very hard.

To her credit, she took the job. Sometimes now I watch her play with Joel and talk to him. I wonder if she has maybe forgotten he is going to die one day. I wonder if it will be a terrible shock to her, and if she will regret taking the job. Maybe I worry about her a little bit. It was a pretty huge thing we asked of her, to come into our house and love our boy even though he was going to die. I'm not really sure that sort of thing is covered by modest amount she gets paid...

And so now I am wondering about you...? I want you to love my boy. But remember, it's going to be really sad when he's gone. And this blog might sort of end abruptly when he goes. I'm not sure what will happen after that day comes... I might not be able to write anymore. So keep that in mind, so that it doesn't take you completely off guard.

The Girl Scout's Motto

Living with uncertainty is hard for me. Well, I think I'm not alone in that. I know there are more of you like me out there.

I'm one of those people who always wants to know about things before hand and mull them over and mentally prepare for them. That is for sure how I like my major changes in life. I want to know about them before they happen, and really think about all the repercussions and effects on my life.

So at times I battle with myself. I have this urge, that I try not to give into to too much. And that is to find out as much as possible from as many parents as possible the whole story of losing their child. I want to know all about it, from a day, a week, or a month before hand, right through the whole thing to the funeral and after.

I've got a lot of questions, and they are the only ones who can answer 'em.
Here is a sample:

Did they have any sense it might be "the day?" Did they call lots of people to come over, or choose to be alone? What did they do with their other children, if they had them? When/how did they tell them? If it was "unexpected" did they scream, or cry or "make a scene" and how did they "cushion" that for the other children? Did they take a sedative that night so they could sleep? Did it work? How long did they spend with the child's body before it was removed? Where did it happen? What time of day? When did they start planning the funeral? What were the legalities? How did they tell people, and what order did they tell them? How did they inform all the agencies involved in the child's care?

I could go on here, but I think you get the picture.

I want to know. Not out of idle, morbid curiosity. I want to know because I want to know what it will be like for US. I want all the possible scenarios. And then maybe I can dodge any pitfalls lurking. For warned is forearmed, in my books. Like somehow there is a "best" way to handle all the death stuff involved...

Kinda like when I got married. I had a lot of questions for the married folks about what it might be like. What was I in store for. And how could I be "mentally prepared, " so there were no bad surprises, so that I could get the best out of my marriage.

And in the case of marriage, most people are more than happy to oblige. It's a bit more awkward asking people about the death of their child. As an understatement. So I try and hold myself back. I can't afford to lose any friends or make any enemies.

Of course, in either case, there is limited value in the information passed on. Because marriages are as different as the 'snowflake' people who combine to create them. No two are like, because no two people are identical.

And so no two experiences with death and loss can ever be the same. No matter how much I knew, I'd never get the answer to the biggest question I have: What will it be like for US?

Still, it is comforting to get that pre-marriage counselling. And it isn't totally useless. There are always similarities in some of the "big" stuff, like fights over money, or "the rules" for good disagreements.

I wish there was some form of "pre-death counselling" too. Yeah, maybe that sounds ridiculous. Maybe I just need to let go of it and trust God to handle out the details. But it is hard for me. I can't help it. It is the "Girl Scout's Motto." I always want to "be prepared."

Crackers

Maybe the first thing I should say is that I am talking about the food, and not my mental state. Cause by now I am sure my mental state would be more correctly termed "crumbs of crackers." Ha ha ha. Though if you read this blog, and you don't know Jesus, or believe in God, you might not have trouble believing that. So read this if you like, or skip it if you find discussions about God or life after death offensive. I won't mind, I won't even know.

Steve and I were discussing the things about what is happening to Joel that cause us the most pain. And yes, they are many. One of the things that came up, was how Joel's life is cut so short, and is so limited, so that he doesn't get to experience all the "good stuff" about life on earth.

I am sad about that, but not so much for Joel. Yes, right now I am sad for Joel, because he can not run like he should be able to. And it makes me sad that he can't speak at all, the way a child his age could, so communication is pretty limited. And he can't play with toys, or do so many of those things that bring a toddler joy. Yes, that makes me sad for him.

But when it comes to the future that he's going to "miss out on," then I am really just sad for me. I am sad that I'm going to miss graduations, and ball games, learning to drive and learning to be honest about where the scratches on the car came from. Girls and seeing my boy learn how to love like a real man. And seeing him as a father, and enjoying his grandchildren. All that good, really precious stuff that I will miss out on. That makes me sad.

But I'm not really sad that Joel himself is missing out on that. I'm sad about what he misses now, but not what he will miss because he dies. I can't really be sad for him about that.

I do believe in life after death, as I have mentioned before. And not in any sort of sitting around on clouds and playing harps sort of way. Though I admit I have absolutely no idea what it will really be like, I do have Jesus' words to the criminal on the cross beside him. He said "This day you will be with me in Paradise." I don't know the details, but I think we can all agree, "paradise" is a good word.

Life here on earth can be pretty good, I'm not knocking it. If you have read some of my previous blogs, you know that I think that life here on earth is a great gift. And that I think we should all do what we can to help other people here, in a physical way, as well as emotionally or spiritually.

Yes, life here on earth can be very good and very enjoyable. So it could be easy to sort of get caught up in it and get pretty confused about what the eternity God has promised for those who believe will really be like. And buy into all that stuff about clouds, wings, and harps, which, I'm just going to be honest, seems pretty dull to me. Hard to imagine it comparing to life on earth. But no where in the Bible can you find any of that stuff, though you will find a verse or two about people singing (in Revelation).

So let me tell you a little "story" to explain what I mean. But first, let me give credit where credit is due. The analogy here is not orginal to me. I heard it in a sermon that Pastor Dave shared just a couple Sundays ago. If he is reading this, he now knows that I really was listening! I borrowed the analogy from him. But my thoughts about life after death are otherwise my own, and from before ever his sermon. So don't blame him for too much!!

So here we go. A story about crackers. Let's say that the Smith family knew a great chef. He was truly amazing. And one day he invited some people over for a big dinner party. And the Smiths were invited. That would be pretty exciting for me, cause I am a "foodie." I like cooking food, but I absolutely love eating good food!

But I digress, carried away by my passion for fine cuisine! So, the Smith family went to the party, all four of them. And let's pretend for a minute that Joel was not limited by a g-tube, but could eat just as well as the rest of the clan.

So they arrive at the party and see these trays of crackers being passed around as hors d'oeuvre (do you know how hard it is for a really bad speller like me to get that word right??). But before a tray gets to them, one of the staff comes down with a special message. Joel has received a special invitation to go right up to dinner! He gets to have a special "preview" of the feast, before anyone else does. The messenger takes him to the dining area.

And the rest of the Smiths get to try the lovely crackers from a tray. Mmmm. They are soooooo good. The most amazing crackers ever! Suddenly, I burst into tears. For poor Joel. He has missed out on these delectable crackers. I am so heartbroken that he has missed them...

No. Not at all. For Joel has gone straight on to dinner. He skipped the crackers, but the great feast waiting for him was made by the very same chef. How can he be disappointed there? Attending a preview is a great privilege, it is not something to sorrow over. If I want to know how good that wonderful dinner will be, all I have to do is taste a cracker. That reveals a small part of the talent of the Chef. But there is so much more waiting! And Joel gets to be there first.

That is just an analogy, of course. But the truth is that the same God who made giraffes, and goldfish and gardens is the one who waits for us in eternity. The same God who invented flying by put in place a law that regulates air flow to create lift, the same God who decided we'd start off in the adorable form of a baby, the same God who created colour and then painted it on animals hidden away in the depths of the ocean where we'd only discover them centuries later - wow! He made flowers, feathers, and families. What could possibly disappointing or a let-down about "heaven?" All I have to do is think about how God designed the platypus and heaven seems pretty interesting to me.

Joel has a hard road to travel until the day he returns to his Maker. He has to be sick, at times. He can't run and jump. I'm not even sure if he can see colour or not. He will only grow weaker as time goes on. The times I see him suffer, it is very, very hard.

But he is blessed that he gets to discover Heaven, without waiting for a whole life time.

And the best thing of all is that he gets to see Jesus' face first. Because the best part of what Jesus said to the criminal being crucified beside him was not the part about "paradise." It was the part about "you will be with ME."

If you don't know Jesus, it is hard to explain that. All I can tell you is that Jesus is the most amazing person, and being in God's presence is like standing in the golden glow of the dawn of a new day and I just don't know how to explain it better.

Now that I think about it, I can't wait myself to get to experience that without being hampered by the physical restrictions of this body! If you think the crackers are good, wait til you get to the actual dinner!!!

Happy Joel

Anyone who gets to this blog via my FB page will likely have already seen this video, but in a longer version. The original was over five minutes, but I could barely get what I did on here. I wanted to put it on here for those who read my blog and are not on my FB. Some of you have never seen Joel, other than by picture, and I wanted you to get a chance to "know" him a bit better. The video is from April, so it is pretty recent.

It is also why it is wise to be cautious when speaking to me about "quality of life." I mean, if you are questioning whether Joel has that. Because this video speaks louder than any words I could ever say. If you watch it with your heart, you can clearly see that Joel has been very much enjoying his life, even though he is sick.

There is this info I came across somewhere, and now I can't remember where. In fact, it could very easily be one of those "urban myths" that float around. So feel free to take it with a grain of salt. This info was a study done of people one year after one of two life-changing events had happened. Either they had won a large amount of money in a lottery, or they had been in a serious accident and become disabled. Does this ring any bells? The more of you have heard it, the more likely it is an urban myth.

Which doesn't in any way detract from what I am going to say. The results of the study showed that the people who had been in an accident were much happier than the people who had won all the money. This is very nice for those of us who feel the pinch of pennies, as we can feel better about ourselves, instead of jealous of those with all the dough.

Urban myth or no, I can believe this is true because I have felt it in my own life. The conclusion of the study was that those who had been in accidents were happier because they had been overwhelmed by help and support from people who obviously truly loved them. They had lost something, but through it all they had learned a source of real joy and happiness: the people that surrounded them and stuck by them through all the hard times.

On the other hand, those poor devils who had the misfortune to win all that money had discovered a different and harder truth. They had discovered that money will draw all sorts of "friends" into your life, and not all of them care about you. Plus the money was just a constant source of decision making situations and all the stress that goes along with it. It didn't make them happier...

I don't know anything about lots of money. I've never had the curse of being so wealthy I could no longer be sure why people hang around me. I have always known that people who hang around me must really like me, because they sure won't get paid for it!

I do know something about going through something hard and life changing though. I can tell you that it truly does bring a special joy with it. For every friend that I might have lost due to them being uncomfortable or just too busy to deal with it (or whatever), I think I have gained two more friends who not only seem to like me in spite of myself, but also who have proved their worth by sticking by me even in unpleasant circumstances. These are the true "Diamond People."

They are a big blessing. And they sure add so much to my own quality of life. And when I look at Joel, in my lap with that smile that seems to light up not only the room, but the universe (sorry, parents of dying children must be given some artistic license), I see a little boy who has only known the truth about quality of life. Things can bring us comfort, but they can not bring happiness if it is not something we already have. The real quality of life is in loving and being loved. Just take a look at that video and try and tell me that is not the truth of it.

Reality Check

On Thursday we got our little "at home suction equipment." It was one of those mixed emotion kind of things. It was such a relief to get it. It is always a good, good feeling to get any sort of tool by which you can feel you are actually helping your child, instead of sitting helplessly apologizing to them for what is happening. On the other hand, it also feel pretty crappy. A tangible bit of evidence that perhaps your son is no longer able to cough out or swallow the secretions in the back of his mouth/throat.

Funny how you can feel two things at once like that.

I have invited a lot of people to read this blog. And some of those people surprised me by actually reading it. And then some of them surprised me even more by inviting other people to read it. And so on. So I think that the "readership" on this blog is a lot higher than I really expected in my wildest imaginings, and some of the people reading it are people I don't even know.

Which is a strange feeling, but I think it is good. I believe that most of the people who actually read this do so, not out of any idle curiosity or "emotionally rubbernecking" but because they really care about what it is like to have an ill child. I think most of you actually really care, otherwise why would you read this? It's really not that good. And I believe that knowledge, especially the kind I'm trying to share, is a good thing. Of course, my profession is teaching, so?? What do you expect? Knowledge is power, and good knowledge is a good kind of power.

On the other hand, it does make me feel strange at times. Because I wonder if people sure get the wrong impression of who I am, as in, a better opinion than it should be. I know I do it. Imagine what the author is like when I read something.

So, maybe when someone is reading this blog they are picturing a mom in a nice neat home. She's got a cute "low-maintenance" mom-type hair cut, a warm smile and two neat and clean children. One of whom is playing nicely with his toys while she is typing the blog, and the other who is sleeping in his crib beside her. There are no papers piled about, they are nicely filed. The counter is clear of dirty dishes. A small amount of tasteful makeup has been applied to her face and she is patiently speaking to her little boy as he asks her a question.

Maybe?

But really, I'm likely sitting here in the morning with my coffee beside me. And morning coffee breath. Both Caeden and I might be in our pj's and most likely he still has breakfast on his face. Not a single hair on a single head has yet been combed. Papers are piled up waiting to be filed going back over a month ago from the last hospitalization. Last night's dishes may or may not be piled up waiting for the dishwasher. There is pretty much always a load of laundry in on the laundry room floor, one in the dryer, and one on top of the deep freezer waiting to be folded. And sometimes there might even be one sitting in the washer that I forgot to put in the dryer and now I have to rewash it...

The first couple questions my little boy asks might be answered with patience, but after awhile exasperation sets in as Caeden buzzes around me like a little fly until I turn on the tv. So much for educational play.

The only thing the same from the first scenario is that Joel is sleeping peacefully, because most of the time, if he is awake, I'm not writing my blog.

Dangerous to write this, because whenever my mother in law reads this sort of info on my blog, I get gentle offers that she will hop on a plane and come out to help. Not that I mind my mother in law at all. She's great and I love her. But no, Ma, we don't need you yet. Though you are always welcome! :)

I don't suppose anyone really thinks I am any sort of "perfect" mom, but it is really easy to think people are better than they really are, when they are not there in person to hit you with reality. So I just wanted to remind you all, once again, that having a child with huge medical needs has not propelled me into any sort of "Mom Sainthood." I just struggle to get by and to cope with what life has handed me. Some days I do that better than others. Some days I might physically get out of bed, but in all other ways I have done the equivalent of pulling the covers over my head and hunkering down for the rest of the day. You know? Sometimes that is as far as I get for several days.

On the other hand, when you read my blog you are likely noticing many grammatical errors and sometimes you are maybe even saying "What??" Even though I am a teacher, (and so a very bad sample of the profession) I do not revise and proofread this the way I should/would if this blog was meant to be some sort of professional thing. I have a rule. I reread it a couple of times for anything glaring at me with wrongness. If I said something blatantly stupid or offensive, I take it out. I look for things that are really confusing. And I put it through a spell-check. And that is the end of the story.

And it shows! A month later I reread it and can't believe all the errors I have let slip. But I make myself leave them like that, instead of cleaning them up. Because I know two things: that I can't afford to spend the time I would need to get it all "perfect" and that I don't want it to get too "polished." I want what I write to be a bit more honest, and I leave it a little rough on purpose. I am worried that if I get too concerned about how it looks/sounds, I might sand off the sincerity. Know what I mean? So my blog looks pretty amateur-ish and is without too many nice frills.

I hope you will forgive me for expecting you to put up with errors and typos. I hope you will remember that no matter what sort of things I go through, I'm just like everyone else. Most of the nice stuff about me, is due to God's grace and not my own efforts. If you really got to know me, I might annoy the heck out of you. I'm not perfect in any way, and just so you know, it is 10:53 on a Saturday morning, and my hair is NOT combed while I type this.

Yikes! Now I have a sudden urge to go comb my hair and fix my face! Just in case you can see me through the computer screen! I better go.

Just a Little Party...

I guess you could say I was feeling sorry for myself today.

I woke up to the realization that Steve forgot to leave the car seat and Joel had appointments today. It was a gray day, hot, humid and gray. And not 45 minutes into my morning, the toilet plugged up and I had to plunge it. Enough said.

So things were not shaping up well.

It was rush, rush, rush. I don't do that well. But everything worked out fine, even if I was having a very bad hair day from all the humidity.

Then we got to our appointments. They were all in the same place, and they are not the appointments which I normally dread as the Rehab Centre for Children is full of really great staff and I just love the people who work there.

Which is why my emotions took me by surprise and I did some of that crying which I previously wrote about. And said that I wasn't going to let that embarrass me. Well, that is what I SAID I was going to do. But it still was hard, to cry like that in front of some of the staff. (and remember, all this crying was with really funny, fizzy hair!)

The pity party really had started earlier in the day, while I was rushing Caeden to nursery school, pushing Joel in the stroller and pulling Caeden in the wagon. Don't worry, this is easier than it sounds. I'm a pro.

Anyway, while I was on my way I was thinking about our summer, and how we wouldn't be able to go anywhere for a "vacation" and feelings sorry for myself and bad for Caeden. I really want to take him camping so badly, but I just don't want to leave Joel somewhere strange overnight... And I was feeling so sorry for myself that these were my choices, even for an overnight trip, never mind actually going somewhere for a week-end or week. Yup. Pity party.

But when I got to the Rehab Centre I saw some children in their walkers, cruising around. It was the adaptive equipment clinic. It was a beautiful sight. But I still felt bad, as it hit me over and over how Joel wouldn't be getting any of the walkers or chairs or standers. There I was with my bath chair for adjusting. And that was the extent of the equipment...

I did ok until the adaptive tech person came in to talk with me. Let me tell you about this lady. We have worked with her a few times now, and she really blows me away. She is like... hmmm... the eye of a hurricane, but in a nice way. She just has this quietness and stillness in her. I don't know how to express it, she just seems like a container of peace when she walks into the room. Like there was a storm, but it all went still...

So let me say that if there were someone that I'd feel ok crying in front of, it is her. She just seems so calm and peaceful and totally at ease with emotion. Which is likely part of the reason I lost it in front of her, when she asked me if there was any equipment they could help me with when it came to Joel.

Because all I had was a bath chair. And that is all I will ever really have.

Oh, sure, if Joel gets big enough they can give me a special stroller. If he gets that far, which I sort of doubt...

I was originally going to get them to adapt the wagon so that both Joel and Caeden can ride in it. Now I just don't see a point, as Joel is most comfortable on his side, and I think the stroller is the best bet for that. And, as previously noted, I have gotten really good at pushing a stroller and pulling a wagon at the same time.

So, I was feeling pretty sorry for myself and I had a few bouts of tears. In the office. In the van on the way home. In front of the computer before and during typing this up.

I'm really thankful for friends. My friend who drove me to the appointment. And talked to me the whole way back about some of her experiences as a foster mother. Which was great, as it distracted me from feeling sorry for myself and made me think of other people for awhile. Lots of hurting people out there besides myself.

And I met my friend Jen online. And had a good chat with her. I can share my heart with her, but I can't feel too sorry for myself, because Jen is the friend who lost her daughter just over a month ago. She reminds me that as bad as it feels that Joel can't really breathe well unless he is on his side, at least he is still happy and right now he is not "sick," as in with a germ.

Now I have released all my tears and shared most of my feelings. Whew. I'm even starting to feel hungry again, which is a good sign, because so far today I have only eaten a banana and drunk some coffee. So I better go and make some supper.

But not before I say thanks to my friends, all of them.

And say how much I respect my friends who have fostered children. They are my heroes. Because I do what I do for Joel because he's mine, I love him, and I haven't much other choice. But they deliberately chose to love and care for other peoples' children. Who have been hurt and damaged by life. And so come with lots of baggage and appointments and paper work, etc, etc. But these people parent them by choice. And love them. And make a big difference for good in other lives. That is my little plug. Think about it.