Groups

I'm going to start by saying that it feels "wrong" to post another blog here. It feels wrong, because it feels like "life just goes on" even though my friend lost the most precious thing in the world, her little girl. It feels wrong. It feels callous. It feels like since her life has changed forever in the most heartbreaking way, there should be something else I can do for her. But I am really at a loss.

I can't even get to the funeral, though I'd really like to be there to give her a hug in person. And as she faces the days going on without Lydia, I'll be out here, far away, unable to even drop in with a cup of coffee and two ears.

So here I am, blogging. It seems wrong, but it soothes me. I actually wrote this the day after Lydia died, I sat there all evening writing it. This blog isn't even about Lydia, but it helped me somehow. I don't know why, but it did. I just couldn't post it... like I said, it seemed wrong somehow. It seemed like I should make my own life different in some way, as a show of solidarity.

But I can't just stop blogging, and I can't just stop doing all the other stuff I do. I'll have to keep doing it all now, cause I'll have to keep doing it all through my own tragedy too. So all I can say is "I'm so sorry Jen. I sure wish there was something, anything, I could do besides sit here and write my blog. If I could be there with you right now instead, I sure would. Please know that I am thinking of you often and every day." And that is all I got...

I was reading someone else's blog a while back. The author was commenting on how as a part of a couple without children, she didn't feel part of the "group" of friends who did already have children. That really made me think.

I mean, if she feels it, think what it is like for me! Cause I often don't feel like I fit in any where. I mean in groups of real people that I actually can see "in the flesh" so to speak. Yeah. I can't seem to find that illusive group that I would fit into when I go to some sort of mixer-type event.

I got an invitation in the mail to a workshop for parents of disabled children. It looked like a good workshop. But not really one I feel like I would easily fit into... I'm not really sure finding "tools to help you see the positives" is really where I am at. Or finding my child's place in the family. It's more like wondering how I will FILL the place, when he is gone.

It is pretty hard to find a group of people who have severely disabled children who have a degenerative disease that is slowly killing them, but not nearly slowly enough. At times it really feels like a race against time. If Joel seemed like he was a bit more 'mild' it would be different. But somehow I don't think that I'll get the chance to worry about wheelchair accessibility or IEPs at school. So it is hard to feel connected to the Society for Manitobans with Disabilities.

My sweet case worker reminded me about wheelchair accessible vans, and that there was overnight respite if we needed/wanted. It was hard to take that with out a bit of a laugh. I have a hard time believing that Joel will ever get big enough to need that wheelchair. And with feeling our time with him is so precious and precarious, I don't know if we'd ever have the ?? whatever it would take to actually leave him with strangers and go somewhere overnight.

There is a support group for parents who have lost a child. But I don't fit there yet. And I am really hoping I do still have a couple of years before I get there.

The only group I can really think of for parents of children who may be dying is the parents of the kids with cancer. Again, I don't fit.

Of course, when I write about all this, I am referring to belonging in a homogeneous group. The sort of grouping we tend to like best and gravitate towards. We feel most comfortable there. We feel understood and we feel safe. There sure can be benefits to this sort of group, especially when you are going through a really hard time. Then being understood, comfortable, and safe are all very helpful things.

For this, I am very grateful for my online support group. It is a real blessing to be with people who "get it" because they have been there too. They feel like family! It is the "homogeneous" group that I fit into, though we are all different in many other ways. Sharing such a major event would give anyone an instant bond.

On the other hand, I have always liked people who were different. In fact, when other people say "different," I usually hear "interesting." And when they say "strange," I usually hear "intriguing." And if they say "eccentric," I usually hear "fascinating." That might be because I have always felt a bit of an odd duck myself, through most of my life. I'm not sure I have ever really felt I totally fit into any homogeneous group of people. Hence I like other people who are also a little "wacky," (read endearing please!)

So here is a little plug for heterogeneous groups. They do have something special to offer. If you take a heterogeneous group of people who all share one similar passion and purpose, you might get some disagreements, but you will also have a force to be reckoned with. Because all those differences put together towards the same purpose can really round out a group of people and make it stronger and better. United by a common goal, weaknesses are neutralized and strengths are optimized. Not to mention, it sure can make life interesting!

And the best example of this I can think of in my own life is the Church. As in, all the followers of Jesus here on earth. It truly is such a diverse group. Single and married. White collar and blue. Every single colour of skin and eyes. All personality types and all sorts of life experiences. All united in a common purpose: learning how to be a follower of Christ. It is a place I also fit in, no matter what sort of experiences life brings me. It's family too!

My husband asked me a while back if I thought only people who faced losing a child could be my "best" friends. I don't think I believe that. I sure hope that I can look on anyone, single, married with healthy children, elderly, different in culture, with an open and listening heart. And when we do this, we sometimes find a bond with someone, despite different experiences. People are shaped by experiences, but we are so much more than just a sum of what we have been through!

A group is different, though. In a group, when we have nothing in common, we stick out. We can't seem to make any connections, because everyone else is already sharing a common one. No one wants to be that lonely little helium atom floating around in all that oxygen. Being the only different one in a homogeneous group is hard.

But friends can come to us one on one. There may be some connections we don't share, but no matter how different two people are, somewhere they are the same. Somewhere a bond can form.

And what truly counts when facing someone heart to heart, is not common experiences. What counts is opening ourselves up to share, being willing to be honest and vulnerable, and in return trying with all our heart to hear the other person, to learn who they are, and be willing to care about what is happening in their life.

So here is a word of gratitude for the groups I do fit in with!! They are a blessing! And here is a word of thankfulness for the wonderful friends I have, both those who have a dying child, and those whose open hearts give me the chance to be myself and share my heart, even though we are different. I'm glad for the people willing to get to know me, one on one. That truly is a great gift.

Lydia Eileen

Today a really wonderful friend of mine just entered the ranks of those who have lost their children.

I've spoken of her here before, her name is Jen, and I have her blog "Lydia Eileen" up on my side bar as a link.

As time goes on and I make more and better friends from the support group, I find that each new death hits me harder. Of course. Now these people are not just acquaintances, they are friends. And then dear friends. And then family.

So today's death feels pretty heavy. Not on account of Lydia. Because I know she is in a beautiful and peaceful place, held by my dear Lord, Jesus.

But rather on account of Jen. I'd write a whole bunch of stuff here about it all, but I just dare not. I don't have adequate words. And only an incomplete understanding.

So I will just say, please pray for Jen and Micah. If you want to get some idea of how very much they love Lydia, and how terribly important she is in their life, you can go to her blog. You can look at all the pics and you can see how they took her to the zoo, and they baked cookies "with" her and planted seeds. The whole story is there in writing. If you take a look, you may get some idea of the sort of pain they are feeling right now. So please, pray for them.

They are special people. I love you Jen.

Hey, thanks all who read Carolina's blog and responded with support! She is pretty amazing!

She send Joel and Caeden each a really nice pillow which she made for them. Caeden loves his, it has replaced his old pillow with Lightening McQueen on it, because it is "snugglier." And Joel uses his all the time. I think it is pretty amazing when your friend who has lost a child and who knows she is going to lose another, takes the time to make your children pillows.

If you haven't read her blog yet, it is the one right before this entry. And let me put another pitch in for another friend, Jen, who has a blog about her daughter, Lydia. You can connect to it just by clicking on it from my sidebar where it is listed. Check out a few entries. She has the best pictures of Lydia all throughout it.

Thanks everyone for your support in reading and responding to my blog. I appreciated it very much. Today I voted for mowing the lawn (which also helped clean up last years leftover leaves - OOOPS) instead of for writing a "real" blog. But don't worry, more are coming!

52 Days and Counting

52 Days. 52 Sundays. That's how many sundays we took our son Jose to the cemetary to visit Diego's gravesite the first year after he passed away. This does not include some Saturdays or clean up days or holidays. 52 days, 52 Sundays. That's how many times Jose got off the car to help carry flowers or balloons to place at the site. 52 Sundays Jose helped us clean the gravesite with damp cloths and a toothbrush to clean up the edges. Half of the time he complained about going, and complained about praying our Lord's prayer over the site. He no longer desires to get off the car and be part of our grieving. "Porque siempre tenemos que venir al panteon Mommy?" "Why do we always have to come to the cemetary Mommy?" those are the words I hear weekly from a four year old who has grieved more than any other child I know. 52 days! 52 Sundays were spent having a picnic on sunny warm days or under an umbrella on rainy days. An occasional balloon launch for birthdays and memorial days were the funnest days for Jose. Then there was the holidays...What 4 year old spends Christmas day or easter morning at the cemetary??? No one. Except mine. Why? I have no answer. It breaks my heart that he was not spending those 52 days at home playing or visiting family or going to a park. That's 52 days we could have taken him to the zoo or taken him to a baseball game or out for pizza. Jose has yet to question me why we easter egg hunt at the cemetary, he just knows it's part of our lives and is as patient as can be. He has made so many discoveries at the cemetary. He has discovered new hiding spots behind pine trees and behind the tall head stones. He discovered which windmill decorations are the fastest and which flowers are real and which ones are fake. He discovered that when the sun is bright it makes the stones look shiny and when it rains it becomes somewhat muddy. He's discovered that if he steps or runs across a head stone that nothing bad will happen. He's made so many discoveries for such a young age and he will continue to make many more. I know tougher days lie ahead when his younger brother Adrian will have to lie down next to Diego. And when that day comes, I will feel at peace that the cemetary will not be a strange and scary place for Jose.

Carolina
Proud Mommy of:
Jose (4rs)
Diego/Zellweger's (angel in heaven)
Adrian/Zellweger's (2 yrs old)

Walking Wounded

This blog has been in my head for a long, long time. I haven't written it, cause I have thought "Is it really my place to write this? Is this really the time to say it?" But at times I find a sort of "writer's block" when there is something in my head and heart that I don't' write. Eventually it is the only thing that comes to me when I sit down here to write, so I just gotta write it so I can move on.


And I want to say a special word for a friend of mine, Tracy W. Hey, I am writing stuff here that we have spoken about, and I know that you want to write it too, in your Carepages Journal. Please forgive me for writing about it myself, but it has long been in my heart, and speaking to you about it has just got it in my head. Please write it too, in your own Journal, cause different people will read it there and they will want to read it too. And I would like to read what you have to say too!



Sometimes people ask me if they can "borrow" an idea, analogy, expression, words, etc to write in their own journals or blog or whatever. Please be my guest! First of all, it surprises and flatters me to think you like what came out of my head (oh, oh, there goes my ego!) and second of all, I borrow from you ALL THE TIME and I don't even ask for your permission!!! Please consider my ideas here public domain! I don't think I have earned the right to "corner the market" on grief!



This is a sort of tribute to a group of people that I have grown to know and love. I have called them here the "Walking Wounded." They are my friends who have lost their children.



I have been sort of asked why I would want to "hang out" with them, since being with them would be a constant reminder of the future I face myself. I'm going to be where they are one day, and is that really something I want to look at everyday?



Short answer: yes.



Yes, I do. These people are the survivors. Yeah, they are going through an emotional place very much like that horrid gray land that Frodo and Sam traverse in the Lord of the Rings. At times, it ain't pretty, I can grant you that.


But strange as it seems, I find these friends a comfort. Yes, I do. They may be wounded, but they are still walking. In fact, the amazing thing is that even with all the hurt and pain in their own hearts, they still somehow have time and love to give to me, to encourage me, to ask how I'm doing. They encourage me. Through all the pain, they are still walking. And even still caring for others.

Often, they are the people who understand me best. Cause they have been where I am now. I feel most comfortable letting it all out to them, cause they have for the most part already thought and felt what I am going through. And they are really non-judgemental about it all. I can just say it like it is. I am grateful to them for that.


But let me tell you something. This has been on my heart for awhile. These are people who have been grievously wounded. Sometimes there are unrealistic expectations put on them. There is this sense that about six months after losing your child you should be coming to terms with it, and by a year things should be starting to look up.

I'm just going to tell "you" right now (whoever "you" are!! Of course, this "you" is not likely someone who reads my blog, but I feel better saying this, so thanks for listening, even if it doesn't apply to you!) that this is just plain crazy talk. It is only the sort of thing you believe is possible when you haven't lost your own child. If you expect these people to get up and dance, there is something you don't understand.


Losing your child is like having a limb chopped off. Or maybe even two.


And it matters not if you had a warning of it or if it happened suddenly. Either way, life will NEVER be the same, either way a part of you is missing. It was there one day and it is gone the next. And nothing can make it grow back.

The funny thing is that sometimes we can understand a physical loss so much better than an emotional one. After all, it is staring us in the face, so obvious. So we would never look at someone who had lost both legs and think "Hey, it has been a year, why is he STILL in the wheelchair?" But for someone who has gone through an emotional amputation, we wonder why after a year, they still aren't dancing.

Truth is, they are still dealing with the phantom pain of a limb that SHOULD BE THERE, rehabilitation, life style adjustments, and a future that seems strange, alien, and sometimes bleak.

If you have lost your child, it is like losing a limb or two. Nothing will ever be the same. It is not a pain you can "put behind you," because losing a child is losing a future. So as the future marches into the present you are not farther from the pain. In strange ways, you can feel even closer to that pain. Our children are people who inhabit our future. We can not leave them in the past. Every day forward is a new day where our child should be. So every new day is a grief, a loss.

A year is not enough time to mourn this. Five years, not enough. Twenty years later you will still feel that pain of the missing part of you were the child was. The child that should be regaling you with tales of the new job. The child that should be introducing you to your new grandchildren. The one who should be bringing you the flowers on Mother's Day.

Yes, I do believe that time will help diminish all the negative feelings. Joy will grow again. Life settles into new routines, and we start to feel more positive, we learn to enjoy the good things around us again. Slowly.

But please remember these people have lost something huge. Realize that the second year after their precious baby is gone might be as hard as the first. And the year after that, too. Let them be sad. Listen to their heart. It is hard to be sad with someone, but you might learn something. In the end you might come away with more than you find you put in. If nothing else, you have gained a true friend to stand with you in your own corner on a day when your own world falls apart. For grief comes to us all, sooner or later. And these people are the ones who can take your hand and show you there is a way through.

Another guest speaker

Hello all!

Yes, I'm still alive, but my sister in law is here for a visit, and I just haven't gotten a large enough block of computer time to really write something. But it is coming soon.

And something else too! I am hoping to have another "guest speaker" on my blog, and I am really looking forward to what she has to say. One of my good friends from the support group, Carolina Alfaro, has agreed to write a blog. I won't tell her story, I want her to have a chance to say what she wants to, but she is on the support group because she is a PBD mom too.

Now I have to figure out the logistics to get her on here and away we go. So please be supportive to her too! If any one else from the support group wants a chance to share, I'll let you take a turn at being a guest speaker too, but ONLY ONCE!! Then you have to get your own blog!! Ha ha ha! Seriously, it is easy and free, so I recommend it.

Hospital survival kit

Well, I have sure had the heavies here lately. DNR's, Missing buses, the relation of time and God to the universe. I thought I'd get a bit "lighter" in my tone.

So, I thought I'd write a little note to you all about what to bring someone if they end up unexpectedly in the hospital. Seriously! You NEVER know when you might need to know this. (oops, sounding a little heavy here again, sorry!) So here is some of the great stuff that I have had brought to me, and some ideas of my own. After several hospital stays, I consider myself a PRO.

Some of this works for the one who is ill, some works for the one who sits with them night and day and some works for either one.

First of all, when it is unexpected, you are sure to really wish you had some stuff like deodorant, mouthwash, or, like one friend brought me, the cutest, tiniest little mascara tube I've ever seen. Oh yeah, and she even included some under eye puffy bag reducer too. She was going to have me looking GOOD. Some of those little disposable face wash cloths are great too. It really is great, when you get up off that bedside chair in the morning to greet the ward doctor, 4 residents, and a nurse, as they all gather round you, to know that you have minty breath, smell reasonable, and even have great eyelashes. And space is at a premium, so the smaller, the better.

If you know someone who is in with a child still in diapers, bring a packet of baby wipes. They do have them in the hospital, but they only crack em out once your little guy has a red, sore bum from the hospital wash cloths. Hospital wash cloths are NOT soft. And baby wipes can be used for so many things...

People who brought warm, fresh coffee were perfectly acceptable too! Mmmmmmm. Comfort food.

Of course, magazines and books are great. Lots of time for reading in the hospital! A newspaper is good too, cause after spending a few days in the hospital, you can really be out of touch with what is going on. But the friend who brought me a portable DVD player and some movies was really into the spirit of things!! I laughed, but it was great. Cause when you are sharing a room in the children's hospital, you are likely watching a lot of children's programing.

A small gift is nice too. It doesn't really make a hospital stay physically more comfortable, but as a symbol it sure can mean a lot. One friend brought me a pair of earings, and I wore them all the time. They felt like moral support. One for each ear, to whisper encouragement as I walked (they were jingly.) Actually, anything that can be worn is good for a woman's morale. Oops, sounds sexist. Ok, it is good for THIS woman's morale, anyway. I don't know what to do for a man. Food?

Healthy snacks are great. I mean it. Ok, yeah, junk food is good too, but you can get it at the gift shop in a pinch. But some peeled and cut up carrot sticks? Crackers and cheese? A banana? All great stuff.

A small pillow might be good. Specially one of those "neck roll" ones, like they sell at airports. For people who have to sleep in a chair.

I think I would have liked something to occupy my hands. Like knitting, no wait,.... too dangerous, someone might get hurt in a scuffle with the knitting needles, and by someone I mean any nurses aide who tries to tell me that the call button is for "emergencies only." Maybe one of those squeezy balls to relief stress or something. Even if you throw it, it will just leave a red mark...

And here is a MUST. If there is one terrific gift you can bring....... (drum roll.....) It is a box of the poshest Kleenex tissue ever made from the produce of a tree. And, seriously, remind the person you are visiting to pull some Kleenex to take to the bathroom too. Cause I don't know what trees the hospital stuff comes from, but I suspect they are cacti. And if you are sobbing your eyes out, nothing like rubbing your face with some sand paper.

But the absolute best thing you can do is bring YOURSELF. Hospitals are boring, lonely places. Time hangs heavy, as you may have guessed. When I am in there, every little scuff of a shoe in the hall makes me look up to the door with a look of wistful hope. Is anyone coming with test results?? With a solution? With an offer of how long until we go home? Or might it be that most wonderful of all... a VISITOR.

So, what I am getting at is: Thank you EVER SO VERY MUCH to everyone who sent or brought a gift, especially when you came for a visit too. And I hope this is encouragement to anyone who knows anyone in the hospital. Take some time out of your busy schedule and do something nice, something that will mean more than you know, and go visit that person! And bring em some decent Kleenex!

Matthew 25:34-40

To my Dad

Ok, seriously, if you are not my Dad, you are going to find this blog a bit boring.
(Unless you are my Mom. Then you'll be curious to hear what I'm going to say to
your husband. By the way, Mom, you know I love you too, every bit as much as
Dad. Someday you'll get your own blog entry too.)
It really is a blog to my Dad. You can read it if you want to, since one of the reasons I'm writing this is to make my Dad feel super great, and if he knows that you all read what a terrific person he is, I'm sure he'll have a smile.

It will be a year on May 14th, since my Dad was diagnosed with leukemia. You would think that learning that your father has a disease that chance says likely will kill him, would make you appreciate each and every day with your dad. You'd think you would never take him for granted, or let a day pass without telling him how great he is. You'd think you would be sure to spend lots of quality time with him.

Well, life with Joel being what it is, full of stress and worry, I feel like I just haven't had time or emotional energy to do that the way I would LIKE to.

Many of the details of that horrible, horrible time are a little foggy now. I suppose thank goodness. But I do remember driving to the hospital in a car after I heard that my dad was "unresponsive" and in ICU. I remember praying, "Please God, not my Dad too. Please, don't take him too. Not right now. I can't survive losing him now."

Ever since that day I have been meaning to go out with my Dad, one on one and having a good chat with him. I really had things I wanted to say to him.

But, as I said, life being what it is, that has not happened. And now he is back to work, and he doesn't come over any more with my Mom, for cups of tea and chats.

Dad, I MISS you. I know you felt like part of the furniture when Mom and I got jabbering away like a bunch of chimps, but you were not. I loved having you there, and I even heard the occasional comment you just barely got in edgewise.

Even as a full grown woman, with a family and problems of my own, you are important to me!! You are like an anchor. I can't imagine my world without you here in it.

So thanks.

Thanks for getting me through the teen years with my self esteem in tact, cause you made me feel special, beautiful. I remember you telling me you were proud of me. You made me feel valuable as a person.

Thanks for quoting Shakespeare at the table with Mom. Neither of you went to university, but I am sure that if it wasn't for you quoting Shakespeare, or Longfellow, I might not have made it there either. So thanks, too, for eating supper together with me every night, and joining with us all in interesting discussions.

Thanks for providing for us. I was fed and clothed until I could do it for myself, and that is no small task. Some Dads bail out. Some Dads bail out and then don't pay any child support either. Thank you for working hard to take care of me.

Thank you for loving Mom, all through these years. I know she is a great mom, and a great person, but I am married myself now. And I know that sticking with someone through it all is not easy. I never once doubted you loved my mother. The only time I can remember feeling insecure about the future of our family, Mom told me that you guys would ALWAYS be together. And I trusted her. Cause she trusted you. So I grew up feeling secure.

Thanks for showing me how to live with integrity. You showed by your own life what that means. Because of what you taught me, I have been able to stand up for what I believe in some tough situations.

Thanks for having a soft mushy tender heart! Now I am embarrassing you, but I am so glad for the times I have seen the tears in your eyes. I always knew that you were strong, but I am so glad you showed me that a real man can care, feel and cry too.

Thanks for loving God, and teaching me about Him. Thanks for taking me to church, and supporting me when I went to Bible College. Thanks for praying for me, many, many times.

Dad, you have given me so much, and this is just a small list. This last year I have worried that you might think Steve and I were taking you for granted. You have done so much for us, and we have been so completely caught up in all things Joel.

You have made repairs around the house. You shovelled the walks MANY times. You and Mom took Caeden to nursery school so I wouldn't have to drag Joel out. You drove me to so many doctors appointments, kept me company and were my moral support. You and Mom picked up all sorts of items from the store for me. You came over for tea and listened to me cry. So many things.

I love you very, very much. Stick around ok?? And come over for tea! Cause I don't want to have to write all this stuff in a blog again!

And, hey, everyone else, if you are still reading this and you still have a dad?? Get out there and hug that man. Tell him you love him. Tell him THANK YOU. Cause you really NEVER know when he'll be gone, and then its too late.

Doubts

My last post, I wrote some of the story of my life, and how I saw God's hand in it, all the way through. How I believed that He had a plan. A plan that He worked out, because I had said yes to Him, even when I didn't know which direction to take.

Well, today I'm going to get "real" in another way. I want to make sure to tell you that I believe every word of what I wrote in the last two blogs. It is every bit as "real" as what I'm going to write here.

But I don't want anyone to get the wrong idea. Think I'm some sort of person with an amazing faith, that there is something about ME PERSONALLY that created all that trust and belief in God.

So today I'm going to share a bit about feet of clay. The feet that do all the walking around in the muck and mire of life. The head is waaaaaay up there, it seems, above the "clouds." But I'm only human, and these feet, sometimes they step in great patches of doubt. And then I slip and come tumbling down. I want to share that.

I have lots of bad days. Days like yesterday. Where you seem sooooo far out of sync with your mate. Where your carefully laid plans to get to the pediatrician and get it over with so that your Friday can be a great time with family, gets run over by a missing bus.

Yesterday was not a good day. It was cold, cloudy, and oh so windy. I used part of my respite hours to get my worker to come early to watch Caeden, so that I could take the bus down with Joel and meet Steve to see the doctor. Then, hopefully, things would go smoothly there and we'd still have a couple of hours to get out for supper together, before our respite worker was done.

Despite my plans, getting us all ready and out the door, braving the buffeting wind (Joel was safely bundled in his weather guard for the stroller, but at times I thought he was going to sail away!) and down to the bus ---- NO BUS. WHAT???

I don't know what happens with these mysterious missing buses, but I can tell you that I am a veteran bus traveler, not some neophyte, and I know what I am doing. Still, every now and then over the years of my life, a bus goes MISSING. And it is always really problematic to phone someone up and say that the reason that you can't make it, or will be very late, is that the bus didn't come. At best, you sound like an idiot who can't figure out the bus schedule. At worst, you sound like you are grasping at really lame excuses.

So I had to trundle back and phone the doctor. If it wasn't already such a late appointment, I would have tried to make it, even if we were really late. But the appointment was already for 4:30 in the afternoon, and we were going to likely be at least half an hour late... So I cancelled and left a message for my husband.

Who had arrived early so he didn't check in at the desk, didn't get my message, phoned home and well, let's just say that things didn't go well from there. I'm not going to go into details both to protect innocent and guilty, and I'm not even going to try to sort out which was which. It was ugly for awhile.

A bad day. The sort of day where you just stomp home from the bus stop, thinking your life is just a series of mistakes. Yes, you heard me. A series of mistakes. Yup, the same person who wrote, just a few days ago, how my life had been directed by God, and how I thought His plan was wonderful. That is what I was thinking. A series of mistakes.

I was thinking "If only..." If only this and that and the other thing, then my life would be DIFFERENT right now. I was thinking, "How did I get trapped in this mess?" Yup, you heard me. How did I get TRAPPED in this MESS? As the saying goes "What a difference a day makes!!!!"

That is the thing about bad days and doubts. You can't base your life or your decisions on them. One of the best pieces of advice I have ever heard was not to make a decision in a bad time. Of course, if the bad time lasts long enough, that might get hard. But I try hard to follow it.

Cause my feet are CLAY. I don't like stress, I don't like difficulties, I don't like negative emotions like anger, neither my own, nor someone else's. I get whiny. I start my own pity parties of "why me" and "if only." I see the events of my life as mistakes that have trapped me, instead of opportunities that God has brought to me. If I could have gotten a hold of an ear yesterday, I would have filled it to the brim with loud complaints and frustrations. You would have heard some hyperbole and some pretty clever descriptions of what had befallen me.

I let you read this blog. It helps me because I'm an extrovert, and I feel better, for whatever reason, knowing that someone cared enough to read it.

But often, what I write, I write for me. Cause I go back and read it. Like on a day like yesterday. I go back and read my last blog. It helps me. These words I have written, when they contain some truth, they help me.

"Yeah," I say, "How can my life be created by a bunch of mistakes I've made, when I can see God's hand in it?" "Hey!" I say to myself, "Did you mean what you wrote, or were you just loving your pretty words and the sound of your own voice?"

Course, then there is what I wrote from the Bible, too. "All things work together for good, to those who love God." Yup, those are hard words on a bad day. Encouraging too, but hard when you are in one of those moods...

Because what it means is that you can't buy a bus ticket and run away to Mexico, even when you really want to. You don't have an excuse for any sort of bad behavior, specially running away, not matter how bad your day is. You have to stick it out and see it through. If you are trusting God, and loving God, and believing it can all work together for good, then you gotta swallow your pride, hurt, or disappointment and forgive any real or imagined hurts. All the frustration, anger, feeling that life owes you one. You gotta let that all go. You know it your heart, if you let it go, it can all be turned around. But it is not easy. At least, not for me.

Being more real: I still have some of the feelings from yesterday with me. Those yucky feelings. So after I finish here, I guess I better go speak with God, and get some things put to rights. Now you know, in case there ever was ANY question: I got my doubts too, and life can hit me pretty hard. I'm not always faith, and thankfulness and flowers. But I know who to speak to about that.

Wonderful Plan: Part Two

Here's the part where I do a bit of "flash back" to previous events in my life. I think it might show in part why I am where I am today. And the parts I'm sharing here will, I think, speak to why I am so sure that God is good, despite the fact I'm losing my son.

Cause when I look back at my life, I see the marks of a Hand on it. Though I have never believed God caused my son to be terminally ill, I must admit, He has allowed it. I think He had it contained all along in His plan for my life. I think it was something He always knew was coming, and maybe if I share some things about the past, you'll be able to see how I think that God knows past and future, and brings all events and choices together with this knowledge, until "all things work together for good, to those who love God." Tough verse, when your son is dying. But maybe this insight into my past will help explain...

When I was growing up, I had foster brothers and sisters. My parents were foster parents, and many of the children were First Nations children. The last set of foster kids that lived with us were a set of 2 boys and 2 girls. They lived with us for a long time (all together about 3 years). We wanted to keep them.

This part of the story is still painful, and I don't talk details with everyone. So, I'm not going to get into it now, on a "public" blog. I will just say that when I was a teen, Social Services moved these children to another home.

I loved them. They were my brothers and sisters, and losing them was a terrible grief in my life. It was very hard for me to understand, and left me wondering for many, many years how God could let something that seemed so evil to me happen to my family.

But just before it happened, God stepped in. I had grown up in a home where belief in Jesus was always a part of our life. And I knew Him. But just before I was thrown into this period of sadness, God sort of spoke to me. It is hard to explain how this works, if you've never experienced it. I'll just say that I felt Him, His presence, wanting to get closer to me. So I said yes to that.

And because I had said yes, and let God get closer, I could make it through that time of grief. He truly got me through. And when I graduated from High School, I went to Bible School for 3 years. Wonderful years. I said yes to God again, when I went to Bible College, even though some people expressed reservations about how three years at Bible College would stand me, instead of moving on to University.

They were three of the best years of my life and I have never regretted them. I learned so much. I made the best sorts of friendships. But most importantly, I got closer to God. And if I hadn't have done that, I'd have never gotten really close to a friend from Manitoba. And I would never have ended up in Winnipeg.

My life went on, but I'll skip some of the smaller details. Otherwise this will be a book, otherwise known as an autobiography!

So going forward several years: I ended up in Winnipeg, working at the front desk of a hotel. God was still important to me, yes. But life was sort of dry. I felt like the business world was a desert just sucking all the moisture from my soul. I decided to go back to university to become a teacher. The spring before University was to start a good friend, one I had met years previously in Bible College, suggested to me that I quit my job at the front desk and work at camp for the spring/summer to get money for University.

I said no. It was not possible. I could make more money at the hotel. And I had never worked at a camp. And the camp she suggested was far away, and I didn't know anyone out there. It just was not practical.

So guess what happened? Right about that time, the hotel chain was sold and the new owners started to lay out some new policies. The front desk was called to a meeting where we were told the new policies. At one point someone objected "but then we would need to lie to the customer." They were told "Then lie." I sat at that meeting and knew that my job there was through. It was a relief. I didn't have to agonize about if I should quit or not. I couldn't do what they asked, simple as that.

This suddenly left me jobless for the spring and summer!! What other job could I find that would fill those four months until university?? Apparently camp. It seems that working at camp was in God's agenda for me.

So for three spring and summers between university I got to work at a wonderful camp in BC. It was one of the best experiences of my life. I am still so very grateful I could be there. New bosses that ask you to do ethically questionable things, that's bad. Losing your job, that's bad. But God stepping in to give you something that He wanted you to have, even when you said no, that's GOOD.

Let me skip ahead a bit. To the time I had graduated from university, but was not yet teaching. I was working with children with CP. It was a great experience, once again. I was very glad for it. But I needed a teaching job, and soon, as I had a student loan to pay. At that time, I was in love with someone and really wishing they would see the light and love me back. I had my plan.

You see, ever since my foster sisters and brothers who were Native, I had always had this, well, love?? for Native people. It seemed to me that if I couldn't love those brothers and sisters, the one thing I could do for them, was to see them in all Native people. I couldn't be their family, but I could show kindness and love to other Native people and that is what I wanted to do. But in Winnipeg.

In a nutshell, here was my plan: I would marry this young man who also wanted to work with Native people. I would live in the North End (where it is predominantly Native) and I would teach there. It seemed perfect.

But it wasn't God's plan. He came with a big eraser and erased it all. All I can tell you is that it was a VERY painful process, starting with the man I loved falling in love with someone else. And things just didn't seem to work out in any other way either.

So I started to reconsider something I'd already said no to. That was teaching up north, on a reserve. I had considered it briefly but had been strongly warned against it by other people. It was dangerous, I had no real protection, I was a very visible minority, I would be far from people who would support and help me, etc. I had to agree. It scared me.

But when God erases your page of plans, you at first see only a blank paper. It is only later that you realize the blank paper is perfect. Because now God can write on it. So I reconsidered. Maybe God DID want me to go up north, to a reserve.

By this late date I found only one posting for up north. And I was really skeptical that it was even still open. After all, the school year was starting already. But I took the information along with my resume to a friends house to fax it.

We tried to fax it several times, but it just wouldn't go through. Good, I said. Relief. That obviously WASN'T where God wanted me. Thank goodness. But my friend said let's try one more time. I sure didn't want her to, in fact I tried hard to tell her it really wasn't necessary, but what could I say? And that time the fax went through.

A day or two later I came home to a message on the answering machine about the job. And I kid you not, I fell on the living room floor and started laughing and crying. I said out loud "I think I'm going to Oxford House" as I lay there on the floor. I knew the job would be mine. I knew my sneaky God was taking me places I would never have dreamed of. And I was right.

Oxford House was also a wonderful experience. I don't regret any of it, except for the parts where I myself messed up. And that is where I met Steve. My husband and Joel's father. The odds are pretty crazy, of us meeting up there like that. And of us both having that crazy, horrible gene time bomb that we had no inkling of when we first saw each other.

You see, I am sure God has a plan for my life. He knows what to do to get me where He wants me, cause I have already said the biggest "yes" and given my life over to Him. He has never forced me to do anything, but I am also very thankful He has worked around the honest mistakes I have made about what I should do with my life.

If it wasn't for those foster kids, I'd never have had an interest in Native people. If it wasn't for my broken heart, I'd never have considered Oxford House. If it wasn't for Oxford House, I'd never have met Steve. And if it wasn't for that, I'd never have had Joel.

When I look back, I see God's hand everywhere. When I look back I see how God's hand was always trustworthy, even in the really bad things. So when I look ahead, I can say it with confidence. I might not see it all now, or even before I die. But I am sure that God has a plan for my life. And I am very, very sure that no matter how much pain, or even agony I go through, though I may not see it or feel it at the time, at the very end of my life I will be able to say that the plan WAS wonderful, all along.

Wonderful Plan

This Sunday's sermon was the inspiration for my blog. Pastor Dave said something about the statement "God has a wonderful plan for you life." And I have to agree with him. Telling someone this does seem like a bit of false advertising. Because God's plan for us does not always seem wonderful. Sometimes it is hard, or even very painful.

Still, he caught me out when he asked us "Do you believe God has a wonderful plan for your life?" I said yes. And while I agree with his points about the whole thing, I do have to tell you something.

I believe that God has a plan for my life, and I do believe that it has been wonderful. Even with a dying son. And I'd like to take some time right now to share with you why that is. Christians call that a "testimony." I'm just going to say that it is the story of my life, and how God has been there through it.

Before I go on, I'm going to get a bit... I believe the word is "metaphysical?" Please forgive me if this sort of thing just gives you a head ache. My mind truly works this way, all the stuff I'm writing is really what I think about. So I hope you don't mind me talking about it. And if you are not interested in all this theological/metaphysical/physics/philosophy stuff, just skip it! The story of my life will actually be in the Part Two of this that I am writing. So, just go straight there.

Further, I'm going to add a little disclaimer here. Some of what I am going to say is NOT actually found in the Bible. I want to make sure that you know that some of these thoughts are my own, or others. I'm not claiming God directly gave me any of this stuff. So feel free to take it all with a grain of salt.

For many, many years there has been a disagreement between various groups of Protestants. And I gotta say, I think it is a silly disagreement. I think it is the result of the fact that when we try to understand God, our puny little brains just don't get it. We often label these things "paradoxical," because two things that seem opposite both appear true at the same time. I think that is because we don't truly understand the two things in the first place. Hence they "seem" opposite. ;)

So, I'd like to affirm that "yes, I believe that God has a plan." And that He knows what is going to happen in the future. At the same time, I believe that I do have free will. Which is what is often hard to understand. If God already knows exactly what I'm going to do, how did I have a choice? Yeah, it is a paradox. I think it is because we don't understand any of the following things: "free will," time, and God.

There was a man who had written a book who was on TV the other day. He was a physicist and his book was about time and the difficulties physicists' find with it. One thing in particular he said that I thought was so interesting was how they were trying to understand how we could remember the past, but not the future. Yeah, YOU HEARD ME RIGHT. Why can't we REMEMBER the FUTURE. Which is a ridiculous question to those of us who just take time for granted and for whom our brain just hurts when we hear a question like that. But for physicists who actually understand Eistein's mind blowing break through about relativity, it makes sense.

It makes sense to me too! It is possible to remember the future, but only for God. The rest of us have limitations put on us.

I think that if we could understand God, and time, it all would make perfect sense. We would be able to see how He is outside of time, looking in. And inside of time, we have and make choices. And outside of time, He already knows what they are. Cause He can remember the future. In fact, He can see it all wholly together, past, present and future.

Let me add to that. There is this thing, in physics (don't let me pretend to really understand much about physics. It is totally beyond me. But I find it fascinating, as long as I personally don't have to figure out the equations.) that says that an observer changes the outcome of events. I haven't a clue how they came up with that one. But when they try to observe what is happening inside atoms, with electrons, or even getting smaller than that, it is problematic.

Let me say, that I think that God is the ultimate Observer. Not that He is outside of creation, just looking in. He is IN creation, in the form of His Spirit. And when things have "happened" in my life, even when they are "small" details, things where I seem to see God's hand, I don't think that is because God is doing what Bruce did in the movie "Bruce Almighty." I don't think he is simultaneously fielding millions of prayers by clicking yes or no the those "prayer emails."

I think that God is outside of time, observing it and understanding every event, and just by being God, He puts events in the right. I'm NOT saying He is an impersonal force. I'm just saying that His power is like that observer who just changes events BY BEING THERE. I think God's presence here, through His Spirit, puts God's plan into place, just BY BEING THERE. And it is His very nature that does it, and assures that things are changed for the better. I don't know if that makes any sense to you, but it does to me.

If this doesn't make sense to you, or if I lost you by the second paragraph, I apologise and thank you for still reading this and indulging me in my ruminations. Yeah, I think about God quite a bit. He FASCINATES me. I only wish I could understand even a fraction of it all. But I'm glad that though I can't understand it, I can KNOW Him. I can talk to Him, and just be with Him.

You might feel that this was all just a big rabbit trail, and in a way it was. You didn't really need to read all that to hear the story of how God has been in my life. But I figured that on a very deep level, you might get an understanding of how I think it is that God has a plan and how I also make both good and bad choices, which are completely MY choices, and how God, as the ultimate Observer/Participant assures that even with all the bad choices that are made, His ultimate plan remains in place. If it didn't do that for you, I apologise again, and will end here before I waste any more of your time.

Protection

You know that folksy little prayer "God grant me..." where you ask God to help you change what can be changed, accept what can't be changed and have wisdom to know the difference between the two?

Well, no where have I found that more of a challenge than in my role as parent, and thus, protector.

Of course, as some might be quick to point out, God is Joel's real protector (and Caeden too, but he is more "straightforward" of a case). Sure. I get that. I know that God knows what is going to happen in the future, I know that He's got Joel's life in His hands.

But it isn't always as straightforward as just humming along sure that there is nothing we have to do as God has got it all. And that is the part that is difficult.

You see, ultimately God is Joel's protector. But for whatever reason, He appears to have left Joel under our care!

I mean, think about what God did with parents. New people come into this world. These new people know nothing about how this world works, what is safe, what is good, what is right. They are pretty clueless. Top it off with the fact that when they get here their bodies can't really do much.

Which is truly a good thing. God knew what He was doing there. Can you imagine if somehow a TODDLER could spring forth from your womb?? All that capability and doesn't even have that trust bond yet. Doesn't even know who "mommy" is, let alone words like "no."

But that means that this brand new little person is totally and completely vulnerable. Unlike turtles, or fish, this little human would have no chance of survival if God did not have this great idea called "parents." And knowing our proclivity for selfishness, He made sure that most of us would do the right thing. Left strictly to our own devices, I'm not sure how many of us would be unselfish enough to burden ourselves with a person for whom one must do everything, even clean up their poop.

So God put this incredible kind of love inside of us. He did this without asking for our permission, cause He knew in the end that families would be one of His greatest blessings on earth. It was a wonderful gift, the way He enabled us to immediately and completely love a person whom we have only just met. I don't know many people who would give their life for a stranger on a subway, but I don't know many parents who wouldn't give their lives for that new little bundle they just brought forth in tears and pain just a few moments ago.

That's amazing and wonderful to me! That is so beautiful, it just about tears my heart out to think about it. If you ever doubt God's goodness here on earth, think about what He gave us, when he created parents and children.

But the flip side of it is, that He gave us this blessing and privilege, but it is also a fearsome responsibility. Could God just miraculously protect every single baby from birth until it can care for itself? Well, sure, I guess so, though it doesn't seem like it would be the sort of thing He WOULD do. If I know God at all, then I gotta say it doesn't surprise me in the least that He has put us in charge of watching over these little people. It's just the sort of thing He'd do.

So every protective instinct, all the love and concern and stress I have when Joel is sick, it is that way because God made it to be so. It is part of His plan that Steve and I care for Joel. He gave Joel to us to take care of. He expects us to take care of Joel. I can't say "Gosh, I'm really tired this week. Joel is not breathing too well, but I'm just going to trust God to make sure that Joel doesn't suffocate and I'm going to take a nap." I wish sometimes it DID work that way. But it doesn't. Steve and I are the ones God has left to make the decisions. To watch over Joel. To have the wisdom to know when to fight for Joel and when to let him go.

This is a difficult and scary thing. It is sometimes hard to know when I can say "Well, God has shut that door, I can relax that I did my best, and trust that He is taking care of it." Like when the doctors refused to send Joel home with an oxygen monitor. I would have felt much better having one. They didn't feel it was necessary. So I had to remind myself that I had prayed and asked God to let us take home any equipment that might help us. And that I had to trust that He had given the doctors wisdom enough for this.

But it is not easy when you are a protector. When you have that protective instinct God has given you, you first response is to fret, worry, and keep working on it.

And sometimes that is what you need to do. Like right now, when my instinct is telling me we should get Joel's adenoids and tonsils removed NOW, not later. The ENT's so far don't agree. I really think that so far I have not done all that is my responsibility to clear the problem up.

God doesn't magically fix everything for us. Sometimes it is our job to keep on trying and fighting for our child. That is why God put that love inside us in the first place. He was making it easier for us to do right by our children. He was protecting our children by making protecting our children as natural as breathing to us.

This is the tension for us parents, particularly parents of sick children. I need that wisdom to know what to accept and what to change. So I gotta stay in close contact with God. When I get caught up in things at the hospital, it is easy to forget that. But without it, I'm just flailing around like a drowning woman, trying to grab any sort of splinter of wood that drifts by. Panic sets in.

It is a fearsome thing to feel the responsibility of a little life put in your hands. It is a great privilege. It is a wonderful gift to be able to love so well and so quickly. But it is a difficult task to walk in wisdom, humbly with our God, so that we might learn to change the things we can, to accept the things we can't, and to know the difference between the two.

Dreams

I never dream about Joel. I never dream about him being sick, or dying. No nightmares. And no "wishful thinking" dreams either. I mean, I never dream that someone found a cure, or that they realized that Joel never had a PBD all along. I just never dream about him.

It strikes me as strange. Because I remember at least one dream, sometimes two or three, every morning when I wake up. I mean, it's not like I'm one of those people who claims not to dream. I'm a virtual fountain of dreams.

It makes me wonder. Why is it that Joel never makes an appearance? Do my anxieties come out in non-related dreams? Or does my constant day time sorting and resorting through it all just exhaust it all out of my emotional system?

I find it surprising and puzzling. I have never before experienced an anxiety, or grieved a loss, that did not turn up in some way during my night time brain recharging.

I mean, I have neither been in school, nor taught myself for years now. But I STILL keep having those dreams. The dreams of tests I didn't study for, or the dreams of walking into a classroom with no lesson plan and a hoard of unruly students... ugh. These dreams I have had for years and years, though even university is almost 10 years past, and I haven't taught for three.

But I suspect very much that when Joel is actually gone, he will suddenly start making appearances in my dreams. I expect when that happens I will start to have the nightmares about Joel needing my help, and I can't get to him. Or the dreams that he is still here and completely well.

I'm expecting this, because the last time I went through grief, this is what happened. It happened for years, before it finally stopped. I really can't imagine it won't happen now.

Maybe there is just so much actually happening in my head and my heart about it all right now, that there really is nothing left to come out at night.

Whatever the reason, I find it strange and puzzling. And I am grateful. Yes, grateful. I cry enough in the day, I appreciate the relief that sleep can still bring. Walking into a classroom of grade nines with no idea what I'm teaching almost a relief when it comes to nightmares. It sure could be much, much worse.

So, thank you God, for leaving me a sleep refuge. I need it!

Doctors

We've had so many great doctors, and I'm really grateful for them. Sometimes, though, you know that they just really don't get it. And it is hard... you can sort of see how you look through "their eyes," you know it's not really accurate, but you can't change it.

And there is a big difference between knowing something in your head, or knowing it in your heart. That gets said a lot. You get used to hearing it. But until it is YOU, getting the heart knowledge pounded in from where it was always in your head...

For example: denial. A stage of grief. And it is one of those things, that gets really frustrating when you are dealing with the docs.

Lots of times it really feels like they are assuming you are in denial. For instance, when they KEEP ON stressing to you how one day your son may have breathing problems that they can't fix. No matter how many times you acknowledge this to them, as long as you are still asking them to treat your child, they are still going to keep saying it. Because if there is one thing you can't deny, it's denial. Like that famous question "When did you stop beating your wife?"

You can't win, until you are telling them to let your child die. And as long as you believe that today is not that day, they are going to assume that you can't accept your child is dying and they are going to keep reminding you. Even though it is apparent that today really IS NOT that day.

That gets pretty frustrating. Believe me. I do understand that whenever Joel dies, it is going to be a shock. Yes, a shock. That is just how life is. And no matter how many times I say it or a doctor says it, death is a shock. It can't be avoided. So I really wish the doctors could realize that as much as is humanly possible, I have come to grips with Joel's death. And there really isn't any more that is humanly possible for me, until Joel is actually gone. At this stage I truly can't move any further into acceptance.

Of course, then there are the times where I am not looking at them clear eyed without a quiver in my voice and acknowledging that the disease is fatal. There are the times when I am telling them for the first time that we don't want them to restart Joel's heart, and then I am crying. Then my emotions are just barely under control. You'd think they'd find this reassuring. Isn't this how acceptance would look?

And then it always the same silly question. Oh, I know they HAVE to ask. Just like they have to keep "preparing me" for Joel's death. So they ask "Are you ok?" I understand they have to ask that.

But really, was there ever such a silly question?? My baby is dying, of course I'm NOT ok. If by ok you mean that I feel great, everything is hunky dorey and under control. How could I be ok? Are you asking if I am going to have a nervous breakdown? Really, you are the doctor. Can't you tell? Or how am I supposed to know that better than you do?? Anyone who knows me well, knows that I cry A LOT and so far, (cautiously said) no nervous breakdown.

As if tears were any sort of sign that you are NOT alright, and clear-eyed statements about Joel are some sort of sign that you are in denial. Isn't crying a logical reaction to this sort of stuff? Wouldn't someone who NEVER cried be a bit scarier? And if you have come to some sort of internal reckoning, can't you be calm and still speaking of a future, even when you know it will be short?

Well, they try. And they mean well. They just don't understand how sometimes they make me feel more uncomfortable about being "emotional" around them. Or how sometimes their efforts to help me realize my son could die soon are like having your face washed with steel wool. Instead of being helpful, it starts to feel unnecessarily cruel.

There are sometimes doctors who do seem to have a glimmering of understanding about it all. Precious people, they are.

I wrote to one of these doctors awhile back. I was asking him for information on a study that he was a part of. This study showed that DHA treatments did not seem to help PBD kids. There is a lot of controversy surrounding this treatment. I was going to put the information up on our group site.

I know this good doctor does not believe that DHA will help our children. But I think he was loathe to give me the info for the purpose of posting it on the group site. Because the DHA can't do any harm. And as he said "Wanting something for our children is a very powerful thing." In that statement, I thought, he really showed he got it.

Because I think he understood that DHA treatments help us parents, even if they do not do much for our children. I think he understood some of the frustration and helplessness we feel. And how grindingly wearying it is to have hope constantly snatched from you.

Feeling like you are doing something to help your child restores some strength to you. Being able to keep hoping despite the odds is that little feathered thing that sits and sings in your soul, as the poet says. It does live on the smallest of crumbs. And it does cheer you through the dark times. I wish more doctors could understand this.

I appreciate the compassion they show. I do appreciate how they try to "keep it real," with regard to Joel's prognosis.

But I can't help but wonder how many of them have gone through this kind of loss, and wish that more of them could really understand a bit better how we must constantly battle to understand and accept what is happening to our child, while at the same time we must keep some small hope for future bright times, however brief.

Marys and Marthas

This last year with my sick boy has taught me a lot about friends.

For a long time now, I have longed for a "best" girl friend. Someone to come over once or twice a week and gab with. Mostly a person to get deep with. To sit and laugh and cry.

A friend who will be there, in the flesh, while I grieve and mourn for Joel and all that has happened to us this past year. And for the future we will lose.

A "Mary" sort of friend. Like in the story of Jesus. Where the two women who are sisters are entertaining Jesus. And Mary sits at Jesus' feet. She is just content to be with him and listen. And Martha scurries around preparing a nice meal and grumbling at Mary for doing nothing. When she finally asks Jesus in exasperation to tell Mary to come and help her, Jesus tells her that Mary choose the better thing. Proving that Jesus didn't think that a woman's only place was in the kitchen. And also that what is most important to God isn't what we do, but our relationship to Him.

In any case, I was sad about this for a long time. I really wanted a "Mary" kind of friend, who would just be there while I did my "grief work." Someone to just sit with me. And it seemed like I mostly had "Martha" sort of people in my life.

They all wanted to "do" something. Make a meal, babysit, offer a ride somewhere. Don't get me wrong, I needed that too, and I sure did appreciate it. Especially the babysitting. But I wanted a Mary friend. Martha's are great, but I was lonely...

Well, here is to all the Martha's out there. Because I have started to learn to finally "hear" you. It has taken me awhile. But now I know what you are saying to me, when you bring over a meal. Or babysit. Or give me a ride. I hear your words.

The words that wrap up the casserole. "I wish I could make this better, but I don't know how. I don't have any words to say, they all seem wrong. I really care so much, and this is the only way I know how to show that. You are not alone. This is a casserole, but all my love is wrapped around it."

I can hear your words now. And now I simply accept, with gratitude. And when I accept, with out protestations, with a smile, I'm saying "Thanks for your love. I know you are being the best friend you can be. Your love wrapped around this casserole comforts me, because I know that you care, and I'm not alone."

It is great to have a "Mary" sort of friend. But I see now that "Martha's" are pretty great too. So, to all my friends, whichever kind you are, thank you. Your love is much appreciated, whichever way you find to show it.

Merry Easter Christmas

Well, this year Christmas and Easter finally met at my house. Yup, you got it. I STILL have some Christmas decorations up. Keep meaning to take them down, but never seem to get the right time to dig the boxes back out of the basement and deal with it.

But, maybe that is not such a bad thing. I mean, really they are part of the same story. I think it is sort of strange how Christmas is the celebration that really got tied to all the peace on earth and good will to men, and Easter sort of gets, well, second skimmings sometimes.

I mean, of course NOW it makes sense, as our civilization slowly strips off the religious meanings to the holidays. Christmas always was the big one, so it can just be called Winter Holiday or whatever and all the lovely hype and smushy feelings are already affixed to it.

But how did it EVOLVE that way. I mean, I totally get it that babies are cute and adorable. And dusty itinerant preachers with claims to be God who end up in a horrible and ignominious death... well, that DOES seem a bit emotionally confusing as a celebration. And a celebration is more fun to, well, celebrate.

Still, that is just a surface glance. And all the generations of people who slowly built up these two celebrations... were they not aware of the pertinent facts? I mean, yeah, there is a death at Easter, and yeah, a birth is definitely more likely to occasion a party, but whoa --- WHAT ABOUT THE RESURRECTION??

I mean, Jesus totally beat out death. Not just death, but EVIL. I'm talking about our death and the evil that lurks inside us. Come on, that is the two WORST things in our existence. The fact that we can not get rid of the evil part of our nature, the one that twists us up. The part of us that not only does wrong, but wants to do what is wrong. The part of us that can not co-exist with a supreme being who is all knowing, just, and completely good. Jesus made the way for us to be able to reunite with God on a permanent basis.

Now I hope I haven't lost any of my readers. The few good friends who do actually read this, sometimes likely more as a favour to me, than out of any real enjoyment. I mean, I realize that it is all about Easter and Jesus and stuff, and I haven't mentioned Joel or what is happening in my life at all.

So let me tell you. The last two weeks things have not been going as well with Joel, as you could tell from my blogs about emergency rooms and DNR's. And yes, today I did make a point to let the doctor know about our choice about restarting Joel's heart. And no, I don't think Joel is going to die in the next few days or even maybe months, though in all honesty, I don't expect he is going to live more than a year or two more. It would surprise me to celebrate a third birthday.

It is not the whole apnea, tonsil, adenoids thing that really is the worry. That has only a surface connection to his actual condition.

It is the fact that we keep upping the seizure meds and then we still have to up them some more. That, coupled with the fact that he just doesn't really seem to be making any gains. That he can not hold his head and does not play with toys. That sort of thing. He is still ok, he is still a happy little boy who coos and laughs. He turns toward me for snuggles and away for playing.

But deep inside of me, I hear that clock ticking, ticking, ticking. And the seizures do frighten me. Yup. One of the well-meaning half truths I was told waaaaaay back when his brain and his EEG and all that came up was this: Joel was at risk for seizures, but don't worry, lots of kids have seizures and it's not that bad, it can be controlled with medication.

A half truth. SOME kids have the sort of seizures that can be controlled with medication, because their brains are stable. No new damage is happening up there, and things sort of equal out with meds with very little or very gradual changes over the years.

But as I found out later, some kids have the sort of seizures that indicate that things are NOT stable in their brains. Things are getting worse, and as they worsen, so do the seizures. And sometimes it is a constant race to keep the seizure control one step ahead of the brain damage. If the damage is happening slowly, it works. If the damage is happening quickly, it soon is a bit of a losing battle.

That is why the fact that though Joel's seizures started off very sporadic, and brief, they still keep happening despite med increases, well, that does scare me. Right now we are still well ahead in this race. But the curve I am sensing frightens me. Every month or two they seem to worsen. The one scenario that I would like Joel to be spared, is the one where he ends up being one of the children who slowly seize more and more and more and more. For months, or even more than a year....

I know some children like this, and why Joel should be spared, when they and their parents have to go through this, well.... I wish I had a compelling reason for God, but I don't. I'm just sitting here hoping that it won't come to that for us.

So, I wrote about the Resurrection today. Yes. Because Easter is my favorite holiday. It is the best news I have ever had, and right now I just felt like some good news. I wanted to celebrate the fact that though I have no confidence about what sort of terrible things this disease might do to Joel and to our family before he dies, I have every confidence that in the end, the disease will not win. Christ is risen, indeed!!! (that's for you, Jen!)

SOOOOOO - Happy birth, death and resurrection of Jesus to you! Come over for some pretty lights, chocolate bunny, egg nog, evergreens, lilies, a wrapped gift and two kinds of carols!!!

P.S. on DNR's

Well, in case I forgot I was human, and make lots of mistakes, I find I must correct two things in my last blog.

First of all, as my husband pointed out with exasperation (as he had told me the story many times and I still got it wrong, so he made me read it in his history book) I made a mistake in my story about the abbot. I had to go back and correct it. It was NOT Muslims he was fighting. It was Cathars. Cathars were a break off sect of Catholicism and were considered heretics. It doesn't in any way change the point I was making. But now it is historically correct, and please forgive my laxness in not double checking my facts. :)

Second, and more important, as I thought about my blog I started to feel very worried. Terrible, in fact. I was worried that someone who read it had already made some choices regarding DNR's that were different from mine. I felt terrible thinking that these persons unknown would think I was in any way criticising them.

Let me clarify: Each person is different in their story. So, of course, I understand that what is true for one is not always true for another. If my husband suffered a heart attack, I'd have them restart his heart!! There may come a time where putting Joel on a ventilator does not seem to be respecting and protecting his life, but rather just prolonging a difficult and painful end.

So please understand that I am in no way trying to make a blanket statement of what is right or wrong for anyone else in their situation. I was just explaining the principles that helped me to make a very difficult choice. And as you can read, it was so difficult for me that though I made the choice in my heart, I have not yet been able to articulate it!

Easter and DNR's

I have had so many "mini" blogs kicking around in my mind, just waiting for me to write 'em out and fill 'em in. Now I sit down and find they have all fled!

So, I'm just going to wander a bit here, be experimental, and see what comes out.

Joel is in the hospital again tonight, and I am here at home. Something I feel guilty about every time I do it. Especially today, as he so clearly was trying his best to keep himself in my arms, and therefore safe from being left in such a terrible place. It is the first time that I have seen this behavior.

He hardly slept for the 8 hours I was there, he just had little "snippets" in my arms, and if I put him down, he woke up. He would stay in the crib for a short while but if I left his side he would shortly start to fuss until I picked him up. Poor little mite! I think he figured that as long as I was holding him he had a chance of going home.

And today when I came in, for the first hour or two he was practically giddy. Just so smiley and happy. Sure I was taking him home, no doubt. It is always hard to leave him there, but today even more so. I just wanted to cuddle him up in my arms and never let him go.

So I hope he can come home tomorrow. I hope that tonight his oxygen levels again stay up. I want him home. Soon. Even one day in the hospital is one day too many wasted!

Though I know sometimes it must be done for him to be well and safe. And I really can't live at the hospital every time he is in there. I need sleep, Caeden needs a mommy too, and there are things waiting at home. And really, we are so lucky that I don't have to work, and can spend an 8 hour day there with him.

Today I was planning on telling the nurses our DNR plan. Steve and I decided that right now, we want them to do everything they can BUT NOT try to restart his heart if it stops. That is the one thing that I just feel will be little use in Joel's case, and if his heart has already stopped, who am I trying to bring him back for?? Not him. Just me.

The thought of them crushing his tiny little ribs, bruising him, or shocking him... it just doesn't seem right when he is already on his way home. I mean, as long as his heart beats, it feels like he might be trying to live. And if he is struggling to breathe, if his little heart is still working at it, then I'm going to help him, if I can. But when his heart stops?? The thought of the violence needed to try to force his life to go on, it just doesn't seem like I'm doing it for him, but like I just can't let go.

Yet, I found I could not say the words. I opened my mouth several times. But I just couldn't say the words. I really feel, down inside, like it is the one thing I feel they should refrain from, in Joel's own interests. But though I feel this, I could not say it. Not today. It felt like giving him permission to die, or something. Not logical. Like I was giving up my right to keep my boy with me, like I ever really have any control on that anyway...

But one of the great things about what I believe is this: life "here" is greatly valued and protected, and also life "here" is not the end, so I don't need to fear death.

(but I just would like to state for the record that I DO NOT believe what I do BECAUSE I like it. I believe it because I am convinced that it is TRUE)

It is easy to forget one of these two things. So sometimes I hear people who say they believe in Jesus say things that makes it sound like what they believe the afterlife to be is more like the ancient Greek view. Like it is a misty sort of existence where all the real "fun" was had in the earthy existence and the life after is somehow less real, less meaningful. Not that they would ever express it this way. Just the subtle way they speak, or even more so by their actions... In fact, I'm pretty sure I sometimes do the same thing. Joel has challenged me in this. He has made me really sit down and think about what I believe happens when we die.

So when Paul says to be absent in the body is to be present with the Lord, yeah, I believe that. And the Lord he is speaking of is Jesus. In fact, this is what Paul says "For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that MORTALITY MAY BE SWALLOWED UP BY LIFE." 2Cor. 5:4 In other words, in our struggles here we long for more, not that we will shed our physical bodies and be spirits, but that one day we will be further clothed, in immortal physical form. Yup, seriously people, the Bible teaches this, read it and you will see. Sure, maybe you already know this. But THINK about it!! Whoa!

So I don't have to worry, or be sad when Joel sheds his broken little body here. Yes, I love that little body, for it contains the spirit of my precious boy. But I don't have to feel that I must preserve it at any cost, like it is all Joel has. Cause one day he is going to get the most awesome body to wear, that makes this one seem like less than a worn out rag. Wow, God. What a gift!

But on the flip side of it all, I know that God still values our lives here. So they are to be protected and respected no matter what physical form they take. There was an abbot (Arnaud Amaury) back in medieval times who was fighting Cathars (a Christian sect). His men came to a town full of both Cathars and Catholics. His men asked what they should do, as they couldn't tell who were the Catholics and who were the Cathars. So the Abbot said "God will know his own" and both Catholics and Cathars were killed together. Now where to start on THAT quote!! That is really not sound theology, for more than one reason.

But the one I'm going to comment on is that though through Christ we have immortal life, in no way are we to spurn or cut off our own life here, nor anyone else's. Christianity has been criticised as being the "opiate of the masses" because it was supposedly making Christians apathetic about life on earth. If people die, no big deal as God will sort it all out later. I truly wonder how much of the Bible the abbot had actually read.

What I have read tells me that life is sacred to God, that He does not judge by appearances, but loves the spirit within us. Jesus died so we could have eternal life, but he also fed the hungry and healed the sick. And he wept over the physical and spiritual suffering of the people around him. Our lives here are precious to HIM. Therefore how we treat the physical aspect of the people around us matters to HIM. It is not ok to let people go hungry, or be cold, or hurt in any way.

So, when it comes to Joel, and to DNR's and all those hard decisions, I find that what I believe offers me two guidelines. First of all, that Joel's life is precious, that I must be very careful about deciding what "quality of life" is worth sustaining, for God Himself has given Joel's precious life to me to guard and care for.

And I must not grasp desperately at Joel's life in his body, I must not hold on to it as though it were the only thing we have. When Joel's time is done, I can let him go, with love, and sorrow and hope. Because this is not the end. I will see Joel again.

So, maybe I will try to tell the nurses again tomorrow. I'll think I will find the courage soon. I'm learning what it means to protect and value my little boy's life. And what it means to trust and hope in God's promise, so when the time comes, I can let him go.