For granted

I'm going to officially say that our "good time" is now officially over. Not only has it been tough sloughing ever since Joel developed breathing problems about 2 months ago, but today there was more bad news, though not about Joel.

My Dad's leukemia is no longer in remission. It is back. This time, cause they were looking out for it, he got to the hospital in much "better shape" than the last time. His oncologist was sounding hopeful, and that was a good sign. He thinks my dad will not be in hospital for the same length of time as he was last year. Last year he was in for 6 weeks. So now we are hoping for less.

I guess it really could be worse, but... Let's just say that even if my Dad gets another remission, we really won't be able to breathe easy about it. Once you have lost your first remission things just look a bit different. I guess you could just say that the optimism about beating the disease has worn off quite a bit.

Spring is usually my favorite time of year, but the last two springs have been sort of yucky. As an understatement I guess. But right now I am living in denial. Well, that is not really correct. I don't have many illusions to cling to anymore. So instead I am just avoiding it all by escaping from thinking about it. In between hospital visits, sicknesses, all that stuff, I just avoid the issue by distracting myself.

This blog wasn't really supposed to be about my Dad though. Originally, before I got the call today with the bad news, it was going to be about a little pet peeve I have.

I sort of hesitate to write about it. Once again, I don't want to make anyone feel bad. I say it is a pet peeve, cause a pet peeve carries with it the implicit understanding that the actual behavior of another person might not really be offensive to most people. That it is only troubling to the one particular person whom it bothers. Or few people, as the case may be.

And I don't think this is something that really annoys me. It more pains me. And with that pain comes a bit of frustration. Because pain will make you frustrated.

Anyway, I decided to write about it. Cause I think it might be good for other people to think about this and understand it. Think about it all in a different light.

You see, when it came to Caeden, people would tell me "Enjoy this stage while you can. It'll be over before you know it." And that does seem like a good thing to do. It seems like not taking for granted the precious times you have with your child before everything changes. It's not that I don't respect that.

Funny thing is, that when you are wistful about all the changes your child is making, you are taking something else for granted. And that is just how wonderful all those changes really are. Something that I can never again take for granted.

So now, when I stand in a group of moms and hear those words, well, it really hurts. I heard them again just this Tuesday while waiting for Caeden at nursery school. A mom lamenting that her child was "growing up so fast." Changing so quickly and she just wanted to enjoy the stage her little one was at.

I do understand what people mean when they say that. It sure does hurt me though. Because I would absolutely give anything to see Joel get out of the stage he is in. Even that little tooth is still just barely a roughness in his gums, after months of waiting. My little boy is never growing up. The only stages he has are downhill ones.

And sometimes I just want to say in reply to those moms: "You don't know how lucky you are. You might miss this stage when it is gone, but it is nothing like the pain you would feel if this stage never passed. Your child is changing every day, and that is a tremendous and wonderful blessing. Every time you feel a pang that your child is growing more independent and leaving you behind, instead say a little prayer of thanks that this can be so. You would never in a million years take that away from your child, just so you could permanently have a baby. Rejoice that one day your child will stand strong, and free as a mature person."

I never would say that, of course. I don't want to make anyone actually feel bad, just cause they enjoy their little one. But I can tell you that I have a permanent baby. He is super cuddly. He babbles with happy sounds and coos at me. He has tiny little feet and tiny little hands. He is just absolutely heartbreakingly cute, with his little toothless grin. And I love him very much. But there are not words to describe the joy I would feel if my little baby could develop in some way. Even just a little.

So after you read this, if you have healthy children, go and give them a big hug. Take a good look at how amazing it is that one day they will not need you. They will be self-sufficient. Strong and able. But they will still love you. Change might make you sad, as you look ahead. But think how happy these changes will also make you, something you might take for granted, unless you think about what it would be like if it was no longer possible for your child.

Compassionate Friends - Part Two

Sometimes it really blows me away, when I realize people are actually still reading this blog. Still faithfully checking in on me. Or people I didn't even know were reading it. I really expected a lot of you would be either too bored, or too sad & depressed by it to keep on reading. Thanks all.

And now I'm going to continue on with advice on how to help someone who's lost a child. And really, some of this applies to a loss of any significant person in your life. Sadly, I think this info is stuff you will find a situation to use it in. So I hope people are reading this. Not so you know how to help me so much as I think there are lots of places to use this sort of kindness and caring.

I'm going to quote the "Compassionate Friends" pamphlet quite heavily. And this time, I'll put it in another colour. I'm feeling a bit guilty over my lax "footnoting" behaviors. It is the teacher in me coming out. But this being a blog, I don't want to get to technical. So: another colour.

Of course, one of the "big things" is listening. But let me quote this part: "Understand that parents often have a need to talk about their child and the circumstances of the death over and over again. It may be helpful to encourage them to talk by asking a gentle questions such as, "Can you tell me about it?"

I was really thinking about this one, as a friend of mine, a sister in this crazy PBD world, was dealing with the anniversary of her son's death today. She wrote in her own online journal about it. And I know it was something she really needed to do. I hope very much that all her friends could understand her need to "relive" that day all over again.

I wish I could explain that to you all. All I can say, is that though you may think it is not healthy, though you may not wish to hear or read anything so difficult and sad, sorrowing parents can not escape. It is normal, and it is necessary for us. You might save us a lot of money we can't afford to pay someone professional to listen, by being willing to listen yourself. Maybe. Or at least maybe we won't have to pay them for as long.

It makes me think of the prophet in the Bible, but now I forget which one it was, cause my short term and long term memory are gone. I'd look it up, but it's late, and I'm tired. Look it up yourself if you are curious.

Anyway, God wanted him to say some things, but he didn't want to. He tried to keep the words in, but they were like a fire in his bones. And that is the best way I can describe it, except to maybe say it is a fire in your brain. It burns round and round, like a hamster on a wheel, until you let it out. Then it's ok for awhile, till the next flare up.

And please, please, "avoid judgements of any kind. 'You should...' or 'You shouldn't...' is not appropriate or helpful. Decisions and behaviors related to displaying or removing photographs, reliving the death (see above once again), idealizing the child, or expressing anger, depression or guilt may appear extreme in many cases. These behavior patterns are normal, particularly in the first years following the child's death."

Every time I think I can shorten or summarize something from the pamphlet, I find I just can't. Too much good and important stuff. I think that it all says it best there. But I'm going to add one thing.

Judgement-type advice, the sort of advice that carries an implicit message that the person is really in the wrong if they can't/don't take your advice, that.... that is the sort of thing that will make a hurting person merely stop telling YOU about how they are feeling. They still are going to struggle. They still are going to feel all the bad stuff. But they will no longer feel comfortable telling you about it. And when I say all this, I'm thinking of myself, how I can think of times I have done this to another person. So, lets all forgive each other and ourselves if we know we are guilty, and we'll just try and do better from here on in.

Finally: "Be there. Run errands, help with household chores, provide child care, and help in whatever way is needed. Don't say, "Call me if there is anything I can do." That call will probably never come. Be aware of what needs to be done and offer to do specific tasks."

So a big, big thank you to all the people in my life who are already doing this. Steve and I have already had lots of help, lots of casseroles, people who mowed our lawn when Joel was in hospital and the city was threatening to fine us, lots of babysitting, people who take me out so I can "get away" from it all, rides to doctor's appointments, all that stuff. Thanks.

I am still going to stress the part where it says "Don't say, 'Call me..." Cause let me tell you, that when things really get ugly, truth is, I'm not going to call either. I just won't.

Not only might I not be able to actually perform that simplest of all tasks, retrieve the phone, dial a number, and speak, but I likely won't even think of it. Anyone who has had some serious emotional stuff go down in their life will likely attest to that fact. When your brain is absolutely numb from the pain, the stress, the depression feelings, believe me, you won't think of calling anyone. I know I won't either, because even now, when the poo hits the proverbial rotating cooling device, it doesn't cross my mind to phone anyone. Seriously. It is like I have shifted to an alternate universe where phones haven't been invented. I only ask for babysitters for Caeden, because Caeden himself is right there in front of me with obviously no place to go. And that is as far as I can deal with the situation.

And even when it crosses my mind to phone someone, I might not be able to do it. There is a point when you are just so emotionally exhausted that you truly can not get the "oomph" you need to form words. You wouldn't think so now, if your life is going ok, but it takes quite a lot of saavy to be able to use appropriate language and inflection when dealing with another person on the phone. And to be able to read their voice in return, and understand their words. A simple question like "How are you doing?" can really just floor you. I mean, I can just stand there like someone has asked me to explain how the force of gravity works in ten words or less.

Never mind trying to decide if they really want to come over/help you out/mow your lawn/hear your problems AGAIN, just from the subtle inflections in their voice. I'd rather crawl into a space shuttle and try and figure out the controls. So I would just rather crawl into bed and pull the covers over my head. You know what I mean??

That's why your generous and well-meant offer to "Call anytime" just will never be used. That is why friends who call and say "I'd like to come over right now for coffee, is that ok?" are fabulous and fantastic. And friends who call up and say "I made a casserole, can I bring it over tonight?" are priceless. And someone who says "Would it be ok if I came over to fold your laundry while you take a nap?" is just out of this world.

Holes

It's hard to imagine how such a tiny little person can leave such an enormous crater behind him when he dies. But that's what he's going to do. When Joel is gone, the hole he leaves behind will be crater-sized, as in the kind a meteor creates it makes it through the atmosphere. Even a small one makes a huge dent.

I've already been grieving for a year and a half. Grieving for all the things we will never have, and the things we are slowly losing. But there's going to be a whole lot of grieving left to do, when we no longer have Joel with us at all.

And the vacancy Joel will leave in my life is a double whammy. Because I'm losing a person I love so much and because I am losing what has become a very large part of the purpose of my life. I'd say I was also losing my job, but that makes it seem more trivial. There is passion and feeling involved in what I do for Joel. Job is too slim of a word. Vocation seems more like it.

Not only will I miss his beautiful face, and his tiny hands, his big smiles, his little coos. The way he turns himself into me when he wants a cuddle. All that stuff.


But what am I going to do with my life? I mean, much of my time and effort in the day revolves around Joel. The four feedings which each take about 2 hours. Giving him medicine three times a day. Holding him so he gets some play, loving, and stimulation, instead of just lying there all day.

People sometimes tell me that I must be so busy. I'm actually not. Well, that is, I'm not when things are status quo. When Joel is ill, it is different. But day to day, I'm not any more busy than anyone else who works for a living. It's not that Joel fills my whole life up with "busy-ness."

But he IS WHAT I DO. I manage his prescriptions, phone em in when they are getting low. Check out the side effects. And I manage the doctor's appointments and medical info. I keep a special watch on his day to day health. I think I take his temp about every other day because he naturally feels so warm all the time, and his fevers are so hard to control. I monitor his breathing whenever he is sleeping. Even when I'm sitting here typing an email, I am also listening with one ear for any changes.

Joel has filled my life in ways that healthy children don't. I mean, he still fills my life just like a wee babe. He does nothing for himself, not even shifting position, getting a thumb to his mouth is about it. But he fills it in ways above and beyond that.

Managing his health sometimes fills my horizon, from sea to sea, if you will. Sure, that is often a sad and difficult thing. But it has become the view from almost all my windows. It is the environment I have adapted to.

I feel like a sailor up in the crow's nest. A vast sea of Joel is all around me. There are storms, loud and threatening. And big waves that are frightening. But I have my sea legs. It's been almost two years on this voyage, out at sea. I have forgotten what anything else is like.

And what will I do, when all that vast ocean is drained away? I will be left in a vast, vast crater, a stinking, mucky, mud-flat and ooze wasteland. I will be run-aground with nothing but slime as far as eye can see. I have no land legs. It will be such a long, difficult, mud-encrusted journey back to find some "dry land."

My life is full of Joel. That's ok, I wouldn't change that, because my time with him is so short. I don't mind the view from my windows, because one day I won't be able to see him anymore. But oh, Joel, what a hole, what a terrible hole, you will leave behind you...

Compassionate Friends

That's not the most original title. No, seriously, it's not. I took it right off of a pamphlet from the hospital, for the parent support group, "The Compassionate Friends." It is a support group, with a chapter here in Winnipeg, for parents who suffered the death of a child.

I don't technically qualify for this support group right now, but I took a few pamphlets, for several reasons.

First of all, when I read one of the pamphlets, it really drove home to me how much I have already entered into the arena of grief. I think I sort of already knew that, but there is just something so confirming when you read some thing in print.

So when it said "Feeling tired, walking in a fog, long- and short-term memory loss, and an inability to concentrate are not uncommon," it did make me feel better. Cause I can tell you that I do have all of that stuff. But apparently it is explained by grief, and not by early on-set of dementia.

And then, they had put out this great pamphlet "How Can I Help... When a Child Dies?" Some of what they had put in there, I had already written in this blog. But it was so good to read it somewhere else in print. And they put it really succinctly and clearly.

I thought about all the times people ask me "How can I help?" And then I thought I would write about what the pamphlet said, in a two or three blog "series." So that people could read it, and understand how to be a friend to me. Or anyone else close to them who is going through grief.

Here you have it, then. The advice of a very large group of parents who have all lost their child, on what would really help them out.

So, I will remind you, as they did, that is is normal to feel helpless. And that there are no magic formulas. And quote them: "Remember that showing your loving concern can be very comforting to a grieving family. Please don't avoid them because you feel inadequate. Families are more likely to reach a healthy, positive resolution of their grief if they receive continuing support and understanding." So, yeah, even if you feel helpless, like nothing you can do or say helps, well, re-read this paragraph. It does.

" -- Don't try to find magic words that will take away the pain. There aren't any. A hug, a touch, and a simple, "I'm so sorry," offer real comfort and support."

I sure wish more doctors read these kind of pamphlets. I think they are so used to trying to cure physical pain, that they just can't help themselves sometimes from trying to use words to cure emotional pain.

" -- Don't be afraid to cry. Your tears are a tribute to both child and parents. Yes, the parents may cry with you, but their tears can be a healthy release."

See, I did write a blog about that one. It was called "Mourners." But I put this one down again for you, because for some people it is easier to understand when it is put clearly and plainly.

"-- Avoid saying, "I know how you feel." It is very difficult to comprehend the depth of the loss when a child dies, and to say you do may seem presumptuous to the parents."

You don't have to tell me that "I DON'T know how you feel," either. I already know that, and being reminded of it just feels lonely. You don't have to say anything about it.

I think most people have a good imagination, and it is easier if you do have children of your own. I think that most people can make a pretty decent foray into empathy just by really sitting down and imagining losing someone they love that much. No, it doesn't really come close to the "real thing." Thankfully. I don't want other people truly suffer that much. But doing that will bring you close enough to grief that you can cry too, and at least understand that things are pretty awful. And that is all you really need to do.

"-- Avoid using "It was God's will" and other cliches that attempt to minimize or explain the death. Don't' try to find something positive in the child's death, such as, "At least you have other children." There are no words that make it all right that their child has died."

I think that is one of the harder things to follow. But it is really important. No one else can say the words FOR me, the words that make me feel there was purpose in it, or that God had a loving hand in it. When I feel that way, then i am the one who can say those words. As tough as it is, you can't say them for me. Or even do or say anything that will help me to say them.

And, I will admit, that I feel very, very lucky to have a healthy child as well. Because I know people who don't. I admit, I'd never change places with them. Losing your only child is a terrible agony.

But that fact still can't make it better that I am losing a child. It is sort of like telling someone who just lost their husband, "Don't worry, you can always marry again." You know? Not helpful at all, really. Or if someone's best friend has died, saying "Hey, you'll make another friend!" So please, don't say that one to me.

I gotta go for now. I have a little boy to snuggle. He IS still alive, and I can still sit and snuggle him and play with him. And there is nothing I'd rather do right now, then take advantage of that fact.

Oasis

I found an oasis in the hospital. Our social worker told me about it. So I went and checked it out. And when I got there, I almost started to cry, right there, in front of the volunteers. It was just so beautiful.

It is the Ronald McDonald family rooms in the old part of children's hospital. It is open to all families who have brought their children in to the hospital for one reason or another. It doesn't have to be for anything super serious. If your child is in for minor surgery, or whatever, the rooms are open for you.

And it is the nicest place anywhere in the hospital. It's like you stepped into someone's home. There is a fully loaded kitchen, one that looks more like a home kitchen, than a hospital kitchen. A lovely dining area. And a beautiful living room type area with a nice tv and it really feels, like, well, did I already use the word "home" a few times? There are even 3 bedrooms available, and a laundry and shower room. The next time Joel ends up in PICU, I can make arrangements to stay in one of the bedrooms. It is wonderful, because you can't sleep in the PICU, but this way I could sleep right there in the hospital, and be right on hand if there were any changes for Joel.

I've been there a few times now, and every time I walk in, I feel my eyes prick a bit with tears.

Because people are capable of some pretty crappy things. And some people do some really, really evil things.

But those rooms are made up of a lot of kindest and compassion. Some people put a lot in, and some people just a little. And all together they made something that makes me feel like a bunch of strangers gave me a big hug when I walk in that room. Sure, I know that McDonald's sponsored the rooms, and a lot of it is corporate money. But when I walk in, I just see the people who donated to the cause. And the people who volunteer in order to run it. Even the people who worked hard to plan it and build it.

It reminds me that though we all share a tremendous potential for evil, we also share a tremendous potential for good. It makes me want to let God work in me to realize that potential. It makes me feel a little bit humble, that so many people I don't even know, who never even know they have done something for me, have, well... ..done something really nice for me. Most of all, it is a little oasis, a place where I can feel like I have for a moment escaped all the stress of life in the hospital. It is a warm hug, from a lot of people I don't even know.

Tidbits

This blog might be a bit random, as I have got a few little "tidbits" to comment on, instead of writing about one thing in particular.

First of all, I have a new addition for my Hospital Survival Kit. Visine. I came upon some at the hospital gift store, and let me tell you, I spent no time deliberating. I promptly bought it. From now on, it will be part of all my hospital visits. And I'm going to keep it in mind for anyone else I know who ends up ... well, you know. In a hospital situation that is not the garden-variety infection sort of thing.

Now I'd like to say a huge thank you to the people who came to my party on Friday, and helped bring some fun and celebration to the end of a very long and somewhat sad week. I have some great friends... who are really family, cause they are the Church. It seems to me that whenever things get particularly difficult, when I am at the bottom of things, God just sends a little word out to these people. Really, it is a wonderful thing, because it feels like a hug from God Himself. So a big thanks to all those people who .... well... stay in touch with God so much that you can't distinguish their love from His. That might sound like a strange compliment to some of you, but I know that they know exactly what I mean when I say that.

And thanks to my faithful PBD support group. You guys are pretty amazing too. Thanks for sticking by me.

Sometimes when I am in the hospital with Joel, I see other kids come in whose parents are either unable, or disinclined to sit with them. It makes my heart break. Sometimes I see parents in really heart breaking situations too. I sure wish I could do something, but seeing as I have no hospital "clearance" to intrude, I only speak if I'm really sure it is ok. If I get a chance, I like to just ask a couple of "small talk" questions, and let a mom get some stress off her chest. Or give a lonely child some smiles, if nothing else.

So I think, one day, far in the future, I am going to volunteer at the hospital. There is a program where you can volunteer to come in and cuddle and play with children who have no one staying with them, or to give a mom a break to get a bite to eat, or whatever. I'd really like to do that. I wish there was a sort of program of some sort, like a "welcome wagon", at the hospital that does something for parents/guardians. The hard thing with adults is that sometimes they might want to be left alone, and you really need to be sensitive. But I'd sure love if I could be there when a heartbroken mom is admitted with a really sick child, just to pass out some Kleenex, Visine, a map of the hospital, and maybe a hug...

My boy has been in hospital a week now, and I am really missing him. The first couple days are not too bad, but after a while, he sure leaves a big hole. Which really hits me and makes me sad. Cause it makes me think of how empty it will be later.

I don't know what will happen when they send us home. I'm a bit anxious about it all, as I know that with all the steroids Joel has pumped in him, it will take a week or two to really see how his breathing is. But now they have worn me down with missing my boy so much. So I'm going to jump at the chance to bring him home, even though I am concerned. I hate it when he is in the hospital.

Oh, and I just thought I'd mention, for the record, that it seems that Caeden DOES NOT have asthma. It was just a virus after all. See what I mean about my crazy, overactive fears??

The last couple of days the doctors were all trying so very hard to be kind and helpful. The doctor who told me I COULD get the monitor came to speak to me personally and to apologize for his mistake (because he was "junior" on the team, and didn't realize that we didn't meet the classic criteria.) I did appreciate that. I think he is one of the kindest doctors I have met, and believe me, I have met some REALLY kind doctors.

So I just want to say that even though I don't always agree with the doctors, and even if sometimes they tell me things that I really don't like to hear, I have never had any doubts that any of them truly cared. Or that they were not trying to do their very best to help us. I still might not agree with them on certain points. I do appreciate them though. I mean, I get angry (sometimes really angry) at family members too sometimes, but they are still great people.

I don't think anyone who reads this would ever come in contact with any of our doctors, but you never know and that's why I don't mention anyone by name. I wouldn't want anyone to get a false idea about a doctor who is just doing his job and who is an excellent physician. Remember, this is a place to vent. I don't hold it against my doctors, even when I think they may be mistaken about something.

I wanted to say something for those of you praying for Joel. I appreciate it so much, when someone says they are praying for us. Sometimes when someone tells me this, I almost start to cry, because it means so much. Sometimes I get to wondering, "Hmmm. What are they praying FOR when they pray?" Because I realize that I haven't mentioned anything specific, and I realize that praying for Joel is a really complicated thing. I have always believed if you are going to ask for something, be specific. Not saying it is wrong to ask that God's will be done. Jesus prayed that too.

I do think that sometimes we "do not have, because you do not ask." So, I like to be bold, and tell God what I REALLY want. Maybe that sounds impertinant. Like telling someone what you really want for Christmas, instead of just saying, "oh, I'll like anything you get me" Cause you think they should really know exactly what you want without you having to ask for it. And you want to seem too "nice" to be so greedy to say what you really want, but you are hoping for it anyway. And then they get you an ugly green sweater and you hate it but you have to keep wearing it cause you said you'd like it and you are really disappointed, not even just with the gift, but with them... see what I mean?

While I AM sure that God already knows what we really want, I think that it is the honestly of the situation that He really wants. Ya know? So - there you go.

So here are some specific prayer requests. Let's ask God for Joel to have a nice, stable & happy time for at least this summer. Let's ask God to keep protecting Joel's hearing. That is a big one. And then, the really tough ones: Let's ask God if He can give Joel the "gentlest" death possible. Even if that means that his death comes as a big shock. I'd rather he died when I wasn't "prepared," then that he be sick for weeks before God takes him. And let's ask God if He would take Joel in the best timing for us, as a family, to deal with it all.

I don't know if God can say yes to all of these requests. Cause I think He has good reasons sometimes for saying no, even when no seems "cruel." Some of them might even be "mutually exclusive." But I believe He might say yes, and these are the things that are important to me right now. So, if you can, please join me in asking for these things.

A bit of a jumble here. Sort of a "house-cleaning" type of blog. I'm going to write another one when I feel up to it. "Holes." You can guess what it might be about...

Really Nice Wolves with Sad Faces and Stethoscopes

Ok, I did say a time like this was coming. And is here now. A dark time. So please don't expect me to be that positive or that objective or anything. I need to vent.

Today was a fairly crappy day. It was crappy enough that it started to feel somewhat like the day we first got the news that Joel was terminally ill. It wasn't quite that bad, but bad enough it felt a bit like deja vu.

First of all, it held several nasty "surprises." Like when I came in to find Joel on nasal prongs again. No biggie though. So I asked the nurse how Joel's night was and of course, it wasn't great. He had a temp and had been breathing badly, hence the nasal prongs. They gave him steroids. But since then he was doing better, and remained fever free all day.

Then the ENT comes along. And starts talking about Joel's partial collapse lung. WHAT??? I didn't even know that Joel had x-rays!! It might have been nice to get the news a bit earlier, and not by an ENT (EARS, NOSE, and THROAT) doc who really is uncomfortable discussing lung stuff.

Then my husband can't make it to the meeting, so I am going to be by myself. Oh, not really by myself, cause all the medical staff will be there. But I am feeling a bit alone as I go. Still, I think, how bad can it be?? I know about Joel's possible floppy epiglottis and I know that things will be hard to resolve. I know that it is likely that Joel is going downhill. I know that the one plan we have is that they will send us home with a monitor for now and we can deal with the questions later when Joel has recovered from the virus. Really, what can go wrong?

And it started off pretty good. I was calm and reasonable. All the doctors were kind and trying to be helpful. No, it wasn't great, hearing about how Joel is likely getting worse, and all that sort of thing. But I am prepared for hearing most of this stuff, though it hurts. The bad news about the stats for surgery with children who have serious neurological problems. The mention of a trach. All that. I relax a bit. See? Why was I worried?

Then I find out my second really nasty surprise of the day. One of the doctors starts discussing how we should stop giving Joel steroids soon, as he had brittle bones and already had several fractions. SEVERAL??? Wait a minute?? So I correct the information, no, we SUSPECT he may have brittle bones as he has had ONE incident of a bruised bone.

Wrong. For the first time I hear that the DAMN x-ray has shown evidence of several fractures. Don't ask me for sure where or what sort, because by this time I am in a bit of a daze. I think we were talking about spinal fractures, at least, that makes some sense, but???

Blindsided with more bad news, and though I feel a mite foolish being unaware of the condition of my own sons bones (though NO ONE TOLD ME), my over riding emotion is that I just want to break down right there and cry because now my son had brittle bones and I am wondering things like: Was he ever in pain and I didn't know?? Is his spine now deformed?? Next time we dress him, am I in danger of breaking something else??

But the conversation moves on. To my last discovery. Turns out that I'm NOT getting an oxygen monitor at home. Something I had counted on. Something I had thought was actually already sort of a "sure thing." Not because I have assumed this. Because it was specifically stated to me...

And now, I am in a "discussion" about why a monitor is NOT a necessity, or even a good idea. Though to be honest, what I THOUGHT was going to be a discussion (which in my definition is a free exchange of ideas and information among 2 or more people) is actually feeling a bit more like an INTERVENTION.

Yeah. It truly feels like an intervention. Like the real purpose of the meeting was maybe more for a group of caring people to confront me with my addiction to optimism, hope, or unrealistic expectations, whichever way you want to say it. Like the real reason was not for them to work out a home care plan with me, but to tell me "Look, my dear, I know it is hard to accept, but your son is dying and there isn't much we can do, he's too far along, and any options we do offer, we really think are pretty crappy and you wouldn't want to go there anyway. We are trying to tell you as nicely and kindly as possible that you should just take your boy home and let him die in peace."

Look, I'm not saying that is what they WERE saying. I'm just saying how it SOUNDED.

And for a few minutes as I looked around I thought what I saw was a group of wolves wearing stethoscopes and sympathetic expressions as they slowly tore out my heart and devoured it. They were ever so sorry and they felt ever so badly about it all. If they had looked fierce I could have been angry and yelled and gave them a piece of my mind. But who can stand before such sorrowful wounding, before such regretful torture?

I felt so alone. So alone. Everyone was agreed (with the exception of one comment from someone who tried to help).

And they even made me feel bad about our partial DNR for Joel. Oh, they didn't intend to do that. But they really, truly made me feel crappy about it. Like they thought it was stupid and "half-assed," like we should make up our minds: Do you want us to try to save him or do you want us to let him go, in which case, Why do you want a monitor???

I felt so alone. I know that most of those men and women really don't have a clue what it is like. I know they think they are being kind. I know they WANT to be kind. And they are very good doctors. But I am the one who lives with Joel. I feel bad for them when they have to tell me stuff that isn't what I want to hear. I'm sure that is hard.

But sometimes I'm still a bit angry. After all, they get paid for this. There are a lot of different ways they can forget about Joel or make sure they don't have to deal with this sort of thing. I love Joel. When I take him home, no one pays me to care for him. There is no over time for me. If I walk away, not only is that questionable morally, but I would just be ripping my own heart out. I'll be the one to love him when he cries, or deal with a trach, or stay all night with my sick little boy. I'll love him, I'll bury him, and I will mourn him. I'm not saying that at night when they go home to their lives they don't feel badly. But it really is nothing like the same level of commitment, is it?

Whew. Done. That was quite a vent... Please don't think that I in any way feel that our doctors are not good doctors and good people. Steve and I have always been very happy to take Joel to Children's. We really feel it is a very good hospital.

But this blog is about honesty. And that is really how I felt today. Like a little sheep in a room of very nice wolves with sad faces and stethoscopes.

Coin Toss

I don't really want to write or post this one. It is about things that I'd rather not admit. But they are true, and I said I would be honest here. So here I go.

Sometimes our greatest strengths are also our biggest weaknesses. I'm sure that has a ring of the familiar to it, but how true I think it is. For mine all seem to go hand in hand. To be the flip sides of the same coin.

You see, (in case you didn't already know) I am a people person. Big time. That is just what life is all about for me, and while I do sometimes like to be alone, people are what brings meaning to being on earth, in my eyes.

And usually I like them. I really do. It is very rare I meet someone, and actually don't like them. And even then, they might grow on me in time ;).

Any personality test I take will come up with that conclusion. It will recommend jobs for me like teacher, nurse, minister, counselor, etc. It will sometimes even say nice things about me, like how I am warm and caring, intuitive and good with emotions.

And throwing all chance at appearing modest right out the window: that is mostly true. I do mostly get along with people. I do value relationships over pretty much anything else. Most of the time I do communicate well and work well with others.

In fact, one test I read said that I tend to make my decisions based on how my actions will affect others (as opposed to how they will affect me, or if they will further my personal goals, etc.) And sometimes that is true.

Which is starting to get into the area of my weakness. The part I am going to tell you that doesn't sound so great about all this people-centred stuff. The place where things turn from good to ugly.

Thing is, I really want everyone to like me. Ok, let's be truly honest here. Not just like me. I want everyone to admire me, love me, think I'm terrific, think I am funny, smart, etc, etc.

When I let this part of me go, it gets a bit ugly. For it turns everything that was once about OTHER people, into being about ONE person, namely: myself. I mean, take a look at all the times you see the words me and I in the preceding paragraph. I mean, "That's enough about me. Let's talk about you. What do YOU think of ME??" It's funny how one side of that coin is all about caring about other people, but how quickly that gets twisted over into the "dark side."

And then again, yet another side: the place where something that can be a strength becomes a weakness. The place where I want to be liked so much that I am insecure. The part where I let how I think others see me get me down. Where I get so wrapped up in what others think that I become completely introspective, lose all confidence, and just feel miserable wondering how other people think of me or if they can even like me.

And all that tends to come out under stress.

When things are good, clouds are white and skies are blue, then I can focus on other people. Then I can be warm and supportive and think about other people instead of myself. It is a great place to be. I wish I were that person ALL the time.

But when things get difficult, emotional and stressful, then the strain starts to show. I feel FRAGILE. I get caught up in my own feelings. Things are not well inside, I feel sad, scared, down. I lose my perspective. I want to impress, to gain admiration, liking, respect, in the hopes that it might make me feel better about how things are going.

Then something happens like the events of yesterday. I crash. Something happens, someone criticises me, or disagrees with me, or I make myself look foolish. Whatever it might be. And I can no longer shore up my self-esteem or feel good about how things are going. And it is a terrible, horrible, no good, very bad day. Even if you live in Australia.

So yesterday was a crying day. I just didn't have it in me to cope. I got into a discussion (read becoming somewhat argumentative) with a doctor. Then I lost it and started crying.

Oh, it wasn't all about me. I mean, being sad and worried about Joel is a big part of why I can't handle ordinary disagreement or difficult discussions. But the final straw is when I feel just plain old like someone doesn't like me. Like they think I am being a know it all. Like they think I am in denial, or I won't get my head out of the sand. Because I want them to like me. I want them to respect my ideas. I want them to think that I am some super star to be so together and pleasant when so much garbage is going down in my life.

And not see the truth about me.

Which is that sometimes I get caught up in my own ideas. Sometimes I don't want to believe the truth. Sometimes I say things in ways that just don't make sense to other people. Sometimes I am wrong. And above all else, I am NOT a super star and I really don't have it together, and my husband (or my mom) can tell you how unpleasant I can get when things get tough.

So I felt stupid. I felt unlikeable. I felt like I seemed disagreeable and unreasonable. And I cried. I cried because of that, but mostly I also cried because I truly wanted my little boy to be better than the doctor thought he was, but really I was starting to fear the doctor was right all along.

(The poor doctor did feel bad. He left the room and came back later, and did his best to try and make it better.)

Tomorrow we go in to have a conference with all the doctors to decide our "plan" for what to do to help Joel. I think it will go well tomorrow. I don't think it will be a repeat of yesterday. And I know only one way to make sure that my strength doesn't end up tripping me up over my own feet (read insecurities).

I'm going to have a talk with God. A little heart to heart. And then, I'm going to trust Him to be there with me, give me the words to say, enough confidence in His love for me to forget about my own ego and feelings. And I'm going to try to look at those doctors and at Joel and I'm going to focus on them. Truly, the only way I know to forget about myself, is to start to focus on someone else. And that is what flips that coin back over.

Big Brother

Yesterday at the supper table I started to cry. Caeden was just miserable from the time we picked him up from the sitter. I was looking at him crying, and feeling bummed out about the stress he was under, being big brother to a sick child. Memories started to intrude, of Joel and how it was when we were expecting him, and when he was first born.

I started crying. Just sobbing there at the supper table. When Caeden asked why I was crying, I told him it was because I missed Joel.

Later on, I was at the computer (blogging) and he asked me if I was still sad and missed Joel. I said yes, of course. He asked me about Joel being with God.

At that moment, I realized, my little boy had misunderstood. I had told him, a few weeks earlier, that when Joel died, he'd be happy with God, but we would still miss him. Since I was "missing" Joel, he must have died!

I assured my little man that Joel was not dead, and that I would absolutely tell him right away if Joel had died. We had a nice little cuddle, and I think he felt better. At least, I did.

But oh the stress for that little boy! So many changes. So hard to understand. Bewildering when your parents are so upset and stressed out.

So, today there was a lot of screaming in the house (no, NOT ME). There was wailing and gnashing of teeth, tears and theatrics, great unhappiness over all things big and small for about 45 minutes.

Finally, I did what I knew I had to do. I chased down my angry little bundle of yelling, crying, mucus, dirt and tears. I grabbed him in my arms. I held him close while he yelled and flailed and even tried to push away and hit. I just held him tight against me, until the struggles stopped. The noise slowly died down, and two little arms finally crept around me and held me tight too.

Ah, my little boy. How well do I understand you, who are so like me. All that great show. All that dreadful behavior, that pushing away and leave me alone kind of behavior. And all your little heart really needs is for strong arms to engulf you in spite of yourself, for love to surround you and hold you tight. If only you knew what you wanted... if only you knew how to ask...

But I know. I know you, my dear little man, trying so hard to cope with so much.

So we had lots of cuddles. And TLC. And those pajamas went on, no big deal. We could eat our supper. We could have a bath. We could even go to bed. No more drama. Just the "everyday" sort of corrections needed. No big scenes, or fights.

How many of us are like my little boy? How many of us spend time yelling, fighting, pushing away? Doing everything possible to be miserable to bear, and to drive away love. When what we really wanted all along was two strong arms to encircle us, despite ourselves, and surround us in the love we are too stubborn to ask for and too proud to take?

Birth Pangs

This was a very strange Mother's Day. I woke up only to get ready and go to the hospital, where I stayed with Joel until 4pm. Then I came home and had supper with my family. I then spent the rest of the evening playing video games.

I think that playing video games might sound really callous when your son is in the hospital. I have to tell you that it is a great way to keep your mind from useless fretting. It is something I have found that I can not do and still think about my problems. It is a great escape. And that is great when the only thinking you can do is not the kind that can help make decisions, or deal with your sadness, but only take you endlessly in circles trying to figure things out.

I have absolutely no idea what is going on with Joel right now. I am baffled by what is happening, and ceaselessly mulling it over really serves no purpose. So I played video games. A terrific escape, though I think my husband really wonders if marrying someone who is also a "gamer" was really a good idea. All you gain through a more game-tolerant wife, you lose in having to share your x-box!

And now I am hear blogging. But I am not going to blog about what is currently going on with Joel's health, because as I have stated, I haven't a clue. Hence my blogging is really another way to keep my mind from stewing, and hopefully get me in the mood to go to bed, as it is getting late.

A while after Joel was diagnosed I wrote a poem (not saying it was actually any good) about how the whole thing with his terminal disease was for me like a horrible kind of "labour" (as in when you have a baby). I called it "Reverse Labour."

Lately I have really been thinking about that all once again. Because this whole thing is for me like long and drawn out sort of birthing, but instead of gaining a child, I lose one. My son is going to be "born" into another world, but not the one I am in. I feel the pangs of this "progressing labour" growing stronger as time goes on, signalling the ever approaching event that I dread.

I somehow managed to have both my children without the pain relief of an epidural. One I managed by choice, the other was purely on account of how fast it happened, and believe me, I'd never have had the ability to say no to one that time, if only I could have had the option!

The first time, I went without the epidural because even though it wouldn't cause any real or lasting harm to my child, I knew that it would be a slight advantage for Caeden if I could make it without one. So I did. In the first while, it was not too hard. The pain was manageable, somehow, and I could remind myself that it was best for baby if I could bear it. It is amazing what you can do for your child even when it is only a small advantage you are giving.

By the time things started to be so painful that I could barely keep myself from asking for an epidural they offered to break my waters. When I consented they did so, and pitched me headlong into some really serious 9 on a scale of 10 sort of pain that was so bad it was all I could do just to hold myself together, and if others had not been around to support me, I don't think I could have gotten through. And epidurals were no longer an option!

When it comes to Joel, I feel I am heading for that "transition" time. I don't know if we are there yet, but I feel the pangs, I think it is coming soon. I think rough times are ahead. I think the pain and sorrow may start coming faster, longer and harder, just like those contractions do.

Right now, the pain is "manageable." This is why I can be there for my friends who are also sorrowing. It sometimes makes me sad. It sometimes does cause me pain. I could take the "epidural" of just escaping and ignoring it all, distance myself from my friends and the sadness and try forget it. I think it might be a bit less painful. But I'm not sure in the end that it would be the best way.

Right now, I can do it. I don't think the pain is going to "damage" me anymore than those dreadful labour pains damaged me. Highly unpleasant? Yes. Do it for "kicks?" NO.

But would I hang in there for my friends? Yes. Yes. It is worth it. They are, in a strange way, the people who will be my "Douala's," my birth helpers, when I get to the point where it is really time for Joel to be delivered. So now, while I can manage my own pain, while I can face it and deal with it, I will be there for my friends. I'm saying no to epidurals and escape. Friends face things with their friends. We bear burdens with each other. And so fulfil the law of Christ.

One day, I will not be able to do this. One day, I will be so rocked by pain, I will not be able to focus on anyone else. My own pain will be all I can see and feel. I may very well need my "doulas" to be there encouraging "breathe! Breathe, come on keep breathing!" There will be no escape, no epidural, no way out but to bear as best as one can until things finally ease a bit in that never ending night.

And this time, there will be no happy greeting of my little one. Instead of the happiness and relief, I will instead be left empty-handed and very sad. At least I will have a circle of kind and understanding faces about me.

One day Joel passed out of me, the only home he had ever known, into a new, strange, but wonderful world where he was greatly loved. Some day he will make a similar journey. He will be released from my care again, in an even greater separation. It will be as painful for me, emotionally, as his birth was physically. He will be passing on into an even more wonderful world, and to an even more wonderful love.

For right now, I can be "here" for my friends. And one day they will be there for me. It's what friends do.

"No one has greater love than this, than to lay down one's life for his friends." John 15:13.

Leftovers

I've already commented on this in other blogs, but I am going to write some more about it. It's the whole thing of how sometimes I feel like other people think I am too negative. Like I'm just sitting around wallowing in sadness, in an unhealthy way. A lot of people give me the very good (if somewhat unnecessary) advice to "just enjoy ever minute you have with Joel."

That is good advice (though, as I have said, I already sort of thought of that myself), but sometimes underneath it I wonder if I hear an admonition, which would go something like this: "You are robbing yourself of happiness right now by focusing on sad stuff. Put that stuff aside and focus on the good and happy stuff instead." In fact, I think a few people might have actually said something pretty much like that.

I guess there are people out there who can do that, and it actually works for them. They can actually just file it all away under "G" and think of only positive things and somehow have mainly happy, good feelings, even though their child is terminally ill. And if that works for them, then good! I'm glad. I don't have any desire to make anyone whose child is ill suffer any more than they have too.

I just know for myself it doesn't work that way.

Let me tell you about my refrigerator. It is, sadly, the refrigerator of a procrastinator. This is greatly troubling to my poor husband. I can only let your imagination fill in the horrors he finds when he makes a foray to find something to eat.

It's usually the leftovers. I do try and use 'em, but sometimes... Well, I open the fridge and look at 'em. There they sit. I don't want to have to reheat them or eat them. And I sure don't want to make any decisions about throwing them away or cleaning them up. Ugh. So I push them to the back of the fridge to deal with them "later."

But this only works for so long. I mean, it does work, for a short time. For a short time, I have freed myself from those troubling leftovers. Thing is, they just keep piling up. Each day it seems there are more leftovers. And then more. And let me tell you, time does NOTHING to improve them in any way. If they were hard to deal with the next day, I can tell you that after two or three weeks go by, it's gone from hard to horrific. You can keep putting it off, but unless you have the money to dispose of your refrigerator and buy a new one, eventually YOU WILL HAVE TO DEAL WITH THEM.

A lesson I never seem to learn when it comes to leftovers. But when it comes to my own emotions, I have learned it. I just try to get those negative emotions out of my emotional "refrigerator" as they come. That's the only thing that works for me, that keeps things bearable.

It sure doesn't mean that I don't sometimes escape when it all gets too much. Respite is one of those times. Or I go play my favorite video game, if all I am doing all day is fretting. Believe me, sometimes I indulge in escapism too much. But for the most part, I take my grief as it comes, in the daily lumps and bumps. And I cry. It doesn't necessarily make it "better." But it does keep it from piling up and becoming UNBEARABLE.

And I want to say something about "enjoying Joel while I have him." Here is the thing, for me anyway. The more I enjoy Joel, the more pain and sorrow I feel. The more love, the more attention, the more I value him, all of that feeling, all of that time, is time when I feel the most pain and sorrow. I really can't see any way around that one either.

It is like the last day of vacation...

You see, the first 10 days of your vacation, you can forget everything else, and just have fun in the sun. You can take each day as it comes, and try to put work and responsibility behind you. It is care-free. You "just enjoy" it.

But the last day of vacation is different, isn't it? When you know it is the last day... You want to enjoy everything to the utmost, but the more great and wonderful it seems, the sadder it is to realize that tomorrow it ends. Worries and work starts to intrude, though we battle to let them go. And in a sense, that is all a good thing. Because all the feelings of sadness that vacation is over and reality is intruding help keep it from being too much of a "shock" the next day, when it is all over. At least, that is how it works for me.

And if Joel was showing signs of progressing, developing, or being less severe than he appears to be, it would be like those first ten days of vacation. We could forget about things for awhile, and just enjoy it.

But it is not. Because he is not. It is our "last day" of vacation. That might mean another month or another year. But we can't ignore what is coming.

I could try to shy away from the sadness involved. But the only way I know to do that is to disconnect more from Joel, not love him more. If I don't want to feel any pain, then I need to be somewhere else than with Joel. Because holding him, hugging him, playing with him, kissing him, just looking at him, all that huge, vast love, all of it.... it goes hand in hand with the pain of knowing I'm going to lose him. The pain IS what makes it precious. The pain is the price tag of loving Joel.

So I can never really put the tears away. Many times when I cuddle Joel or play with him, there is a smile on my face and tears in my eyes. Really loving someone will cost you something. As a favorite movie says "Love IS pain, Highness. Anyone who tries to tell you different is selling something."

It is a price I am willing to pay. My choice is made: I will love Joel freely and with out reservation, even though it pains me now, and will rip my heart out one day. I wouldn't have it any other way.

Please don't think that all of this means that I am never happy, or joyful. Especially the joy part. I don't know how to explain this, but even in all this pain and sorrow, there is joy.

I have heard many people try to explain joy, and the difference between it and happiness. It's really hard to figure emotions out. Let me say, that when I am talking about joy, I'm talking about the feeling I used to get when I was a teen, swinging in my front yard. The sky was blue, the birds were singing, and as I went, to and fro, joy would well up inside me. I was soaring, really soaring in my spirit. It is the feeling that beauty inspires in me. And funny thing is, it is the feeling we are talking about when we say something is "so beautiful, it makes me cry." Like at a wedding.

I get this joyful feeling when I see the beauty of nature. The fingerprints of God. And I get this feeling when I think of God's love, or His power, or what Jesus did on the cross. Joy. My heart and spirit are soaring.

And let me tell you the funny thing about this emotion. I have NEVER felt joy when I was angry. I have NEVER felt joy when I was worried. I have NEVER felt joy when I was depressed, annoyed, frustrated, bored, or any other negative emotion like that.

With one exception.

I HAVE felt joy, even when I was sad. I HAVE felt joy, even when pain pierces my heart. So, when I hold Joel, and I feel such pain, I often still feel joy to look at his face. And absolutely, when I feel so sad that I am going to lose him, I have still felt joy to think of how beautiful it will be when Jesus bring my boy to greet me one day when my life here is over.

With sorrow, joy. With love, pain. And that is the best I can do right now, to enjoy my child while I have him. I think anyone who tries to tell me differently is selling something...

Words

It is Tuesday again, and respite day, and blogging day too. Good, because today I am having one of those "tired" days. Don't know why they happen. Maybe it is internal stress dealing with the emotions that go along with Joel. I would say that it is depression, cause I know that depression can make you very tired. But honestly, I don't really feel BAD. I feel very sad at times in the day, and I also do have lots of happy feelings. But I don't think I feel depressed.

Still, I get these tired days. I just don't want to do ANYTHING but sit on the couch. Sometimes the feeling goes away, or sometimes I start off pretty peppy, but just run right out of gas. I feel bad, and it is hard to explain it to my husband who has to go to work every day and get stuff done. Then he comes home and wonders why the attempts to manage the home seem "limited." It isn't like that every day (thankfully) but I sure do have my days.

It has been just about a week, since Lydia went home to be with Jesus. There isn't much to say about all that, except that I have been feeling really sad about it all. I think about her and Jen a lot during the day. It is really frustrating to be so far away from your friends when they are going through so much pain. So, since it is on my mind, I'm just reminding you of Jen, too. So you can keep praying for her and Micah.

I have been thinking too, about words. I mean, about the power they have. And how they become "charged" either positively or negatively for us. I was thinking about how some words are just ugly, because they stand for something nasty. And how some words can evoke very pleasant feelings. For me, the word "mother." Then that made me think about how words with good feelings attached for me, might not have that for other people. There might be someone for whom the word "mother" carries a lot of yucky emotional baggage. Sadly, it might even be an "evil" word.

In the last year, many words have changed for me. Some have become even more "ugly." Some have become "ambivalent" where before they were "happy."

With so many words constantly bouncing around in my head, with happy, sad, or ugly feelings attached, I thought I'd share a list with you. I guess instead of the "good, the bad and the ugly" it would be more like the "good, the bad, and the ambivalent (or emotionally confused.)"

Here are the real "uglies" for me:

deaf & blind (yes I know that some deaf & blind people have amazing lives, but for my little boy in his limited world, it seems a horrific possibility to me)
mutation
untreatable
damage
progression
diagnosis
hospital
ICU
terminal
seizure
ventilator
pneumonia
life expectancy
demylineation
loss
degenerative
gone


Yup. Those are the real badies. If some of those words ever held a good or neutral connotation they sure don't anymore.

This next list may have some surprises. I might explain some of the choices, though I think others will be "no brainers" if you think about it. These words are not neutral. They have strong emotions connected. It is just that they have several different kinds of emotions attached. For any positive ones, there are also negative feelings evoked. Or vice versa.

pregnant, pregnancy, expecting, etc. Any "baby" words, actually.
milestones
birthday (or any other age related words, no, its not because of my own age either)
palliative (yes, palliative. Because when your little one is in pain or discomfort, the wonderful people connected with this name will help you.)
medication
formula
test (going along with any other word, like MRI, vision, hearing, etc)
doctor
nurse
P/T, O/T (things I wish I could see Joel benefit from)
appointment
vacation (something other people can plan or go on, something I wish we could do)
liver
brain
g-tube
wheelchair (something I'd be happy to get a chance to use, oddly enough)
breathing
eyes & sometimes other vision words (like when someone says either Joel or Caeden has beautiful eyes)
family
healthy
help (not because I don't appreciate and need it. Because it's something I wish I could give more of and needed to receive it less)
brother, sister, sibling words
next year, planning, in the future, any words connected to the future
three years old (because I am sort of expecting that year of age for Joel will be our worst time)

Well, that list is a starter, anyway. It sometimes amazes me how some of the words that are about good things, can still give me such a pain when I hear them. But don't take them out of our conversation! Pregnancy and babies are beautiful things, I wouldn't want to remove them from my vocabulary even if they sometimes hurt.

Here is a list of the beautiful words. I'm not going to put either God or Jesus on the list. Not because they are not beautiful. Just because I don't think I can "categorize" words with such a special meaning. Just wanted you to know, in case you wondered why they were not on the list.

friend
casserole (and all foods connected to comfort, caring and support. (pizza))
listening
visitor
sleep
happy or laughing
relaxing
home
church
gift
coffee
understanding
support group
encouragement
"Don't worry, I'll take care of it."
together
peaceful

Steve,
Caeden,
and JOEL. And those are truly beautiful words, though perhaps not always pain-free.

Probability

Caeden has been waking up lately with a nasty, barky sort of cough. At first I thought it was a cold. But after a couple of days of morning cough with no other symptoms, I have begun to realize it is likely asthma, just like his dad.

So on Monday, I will make a call to his ped to sort it all out. On one hand, it is no biggie. I mean, hey, asthma can be treated.

On the other hand, I find this disease has stripped me of a protection that most of us have. The ability to think of unlikely things as being unlikely. I mean, we all know that the probability of being in a car accident is pretty high. But we are able to get into a car and drive somewhere, because no matter how high the stats, we know the odds are still "good" that we will get where we are going with out serious incident. We (most of us, anyway) have before, so we will again.

And when we are pregnant and thinking about all the things that can go wrong, we switch on that little protective mechanism that assures us that our fears are pretty groundless. That "most" pregnancies go well, so ours will too.

It is a very useful mechanism. It keeps us from going insane, from living in a constant state of anxiety, from being paralysed by fear.

I only wish mine was still working well. Oh, it is still there, or I'd be in a hospital. But it has taken a serious hit, and it is a bit damaged. In fact, sometimes it "malfunctions."

I have learned the hard way that when you look at stats, even when they say only a 1% chance, that 1% is somebody. And you can be somebody too.It is the sort of lesson that doesn't fade easily.

And so I was sharing with my good friend Carolina one evening about all the "ridiculous" fears that I constantly battle. Not so much with Joel. For in his case, those fears are no longer in the "ridiculous" category, and the worst has been confirmed as a certainty. Not much more room for probability here.

But in the case of Caeden. Oh my. You wouldn't believe the crazy things my mind comes up with. Like the morning cough. I started to get pretty anxious about waiting for Monday to come. What if Caeden suffered a really severe asthma attack at night and we didn't hear him?? What if I walked into his room and he was dead. YIKES! All this from a cough that only started a few days ago.

If you think that is bad, how about the time we were driving to the park for a picnic. Now there is a wonderful, happy occasion. How could I turn that into a tragedy? Well, seriously folks, I started to think about what if a rogue bear came along (yup, you heard me, a rogue bear in the local provincial park) while we were having our nice little picnic. You can imagine the horror that started to form in my imagination then. And I started to plan out what would I do, how could I save Caeden from this? I was waist deep in this horr-antasy when I caught myself. "What is WRONG with you," I thought. How did I go from happy picnic to scene of violent death in seconds?

If something like a picnic does this to me, you can imagine other things in life. Walking to nursery school and being struck by a "rogue" car. Deadly illnesses that result from small scratches or start as a little cough, or runny nose. Looking away for a second at the park to glance back at empty air. Oh, you can't imagine it! But I apparently CAN. I know regular parents face this too (from when I was a "regular" parent), but let me tell you, my worry machine is in hyper-drive!

Cause the lightening has already struck in my life once. So I have realized that yes, it CAN happen to me. It CAN happen to my loved ones. And it can be the absolute, more terrible thing. The sort of thing that previous to this, you read about and were so glad that statistics made it so unlikely for you, that you could just stop worrying about it altogether. Put THAT one out of your mind. It'd never happen to YOU.

WRONG. Now I know. No matter what statistics or odds say, bad things CAN and DO happen, even to me. Not that I thought I was bullet-proof or anything. We just ignore the part that says "possibility" and focus on "probability." It is just that little protective mechanism. And now mine has taken a hit.

Sometimes people give me that well-meant piece of advice/consolation. That we are in God's hand, and that He is in control of it all, so we can just leave it with Him. Well, I have to leave it with Him. What other choice do I have? But, honestly, that doesn't really make me feel much better. The whole thing with Joel was in His hand too, but here we are, in this terrible place. A place I can promise you I'd have NEVER willingly gone, no matter how much good God promised to make out of it. (Though I know that one day, far in the future, I will be glad that He did.)

And if you are thinking that God would never allow me to lose my only healthy child, well, I can give you an example of where He did just that, namely Job. I think when it comes to stuff like that, there are no guarantees.

Well, this must all seem pretty depressing stuff. You know I have never promised you sunshine, just honesty. There it is.

So I will say the one honest piece of encouragement that I can say to you and to myself. No matter what sort of statistical group I end up in, I do know that God will be there too. I can't stop every bad thing from happening, or protect Caeden from every evil thing that might head his way. I will, in the end, have to trust God to protect him if that is part of the plan, and if not, then I gotta say, along with Job, "though he slay me, yet will I trust Him." The real thing I control is not what happens, but who will be there with me through it all. And I do know who I want that to be.

Pain, loss, disaster, all can not be prevented. But nothing whatsoever can take me out of God's hand. He is one thing I can hold on to, and no one can take that away. No matter what happens. And so I rest in the shelter of His love.