P.S. on Stickers

Ok, once again I feel the need to clarify what I said in my previous post.  Sort of ironic, isn't it?  Here I am clarifying my words about other people's words...

- No, I'm not angry when well meaning strangers ask me well meaning but misdirected questions.  I'm TIRED.  It tires me out.  But I'm not angry.

- No, I am NOT referring to any of you who actually know me and ask me how Caeden is doing.  Please know that friends are different, always.

- No, I don't want people to avoid me instead of "saying the wrong thing."  I just wish there were more people in the world who felt ok with silence.  Yes, sure, better to say the wrong thing for the right reason then say nothing at all for the wrong reason.   Or more plainly: Better always to err on the side of caring too much.

-  I just wish sometimes that a few of us out there would realize that their words are not the important thing so much as their focus.  How about if I talk about myself for a change, and then no one will (hopefully) feel as though this is targeted at them.  (you know if you actually read my blog, you are now in a special group of people who can do NO WRONG in my books.  Honest.  ;)  ) 

So let me say that at times I have found me, my own self, guilty of this:  Instead of stopping and just focusing on the person, on listening and being sensitive, I get caught up in what I can say to them.  I stop focusing on them, and I start just really thinking about my own words.  I sincerely desire to encourage or help.  But I forget that the key to that is turning my heart to their heart, and my eyes to their face and expression.  And I thinks somehow that it all depends on me and what I can do or say.  Instead of just being gentle, quiet, and loving.
 
There are people out there who can tell you they know what I mean, because they have felt me lose my focus before.  Yes, I am guilty of doing it too.  Even now sometimes.  Even after Joel.  Double shame on me, because I really should know better.

And so I keep trying to remember to find that place of quietness in God, to see with His eyes and wait to see if He will give me words, or more likely just ask for my ears and my arms.  And when I mess up and forget, He forgives.

And so I must also do for others, who try and fill up my pain with questions and words.  And hope they do the same for me.

And when I share this sort of thing, I hope it is not discouraging you from reaching out.  I hope it is just encouraging you to reach out with a focus on the person, and not on the words you can say.

Good thing about clarification, is that it is also an excuse for more pictures.  :)

Stickers.

First, if you haven't read the previous blog, then please, please do so!

That slippery cat jumped out and surprised me once again.  This time I was at a nursery school, to register Caeden for the fall. 

The nursery school where he went, not this year, but the last year.  And where, when I took him, I also brought Joel with us, pushing him in his stroller and pulling Caeden in the wagon behind us.

I surely don't know why I continue to be so surprised by my reactions...  What do I expect to happen when Joel has only been gone for just over a month?  Yet, once again, I am completely surprised that as I walk down the stairs and into the school, I am suddenly awash in emotions.  I am blinking back tears and trying to "maintain my composure."  I am surprised, because I thought:  nursery school = Caeden.  I am taken aback to arrive to find that:   nursery school = Joel, all of a sudden.

I get myself under control to talk to the teacher, who is new this year and did not know us, or Joel.  But then one of the parents, who also works there, walks by.  And I know if I tell her, I'm going to cry.  But I also know that if she walks out without me telling her where my other son is, I'm being...bound?... by feelings that somehow it's better to appear in control and unaffected and not "embarrass" people with my emotions.  And she did know Joel, and I don't know when we'll see her again, but surely people deserve to know and not wonder where my other child went.

So I stop her and tell her.  And of course, I cry a bit.  And in front of the nursery teacher who has only just met me. 

It's ok, though.  I'm glad I told this parent.  She's a nice lady and my son has continued to ask about her son all through this last year.  She gives me a hug and says she is sorry, and that Joel was a very sweet little boy.  She says she will be praying for us, and then she leaves.

I'm glad I told her, but then it does leave me in an awkward situation with the nursery teacher, who is a very nice lady, but...

Let's just say that it is hard for me sometimes when people who don't really know us come along to be "helpful."  By which I mean that they are worried, of course, because we have lost our child.  And they don't know the resources we do or don't have, or the supports, etc. 

So then I must give them what feels like a short "psych evaluation."  I'm sorry, but it does!  "Do I have family living close by?  Do I have a church I attend?  How is Caeden doing with it all?"  Questions I answer quite a bit, trust me.  I feel I should have a real evaluation and then just pull it out and hand it to the well meaning people.  I'd really rather that they'd just ask about Joel.  But aside from asking about his illness, they don't really know what to ask...

And when it comes to the last question, the one where they ask about Caeden, really, there is no good or safe answer to give.  If I tell them Caeden is doing well, I see the thinly veiled skepticism there.  I can see they think that I must have a mother's blind spot there.  How could a child be doing "well" after his sibling has died?  I think that answer almost distresses them... if I'm not mistaken about his reactions, then the thought that a child could be ok with the death of a sibling is disturbing perhaps.  I don't know.  It all looks so different from where I stand, and I'm not sure I can see other people's positions as well anymore. 

And of course, the only other answer is to try and give em some details of how it has affected him.  You know.  He's had a few nightmares, or he's acted up a bit... although those are really the only two things I can really think of that show much distress about it all.  But do I really want to talk to people who don't know us about how Caeden is doing?  No.  And even less do I want to hear them give me advice about it.  I don't want to hear them tell me that "it might show up later."  Partly because I already know this.  And partly because I already know a lot more about Caeden and his relationship to Joel then they can even try to imagine.  So I don't want to hear advice about how Caeden might feel guilty, or whatever obvious advice other people have to give on it.  It's not like I haven't thought about it, or worried about it, or tried to help him with it. 

I guess it is mostly because I feel like these people who don't really know me have already assumed that I have been and will be so consumed by my own grief that I can't see or care about my son's grief.  And this is a difficult response for me to see them making.  I am a mom, which means I feel guilty for grieving because it might hurt Caeden.  And their assumptions don't help. 

And a small part of it might be that there is a sore spot in grief.  This sore spot is called "advice."  I know I have been guilty of giving it too.  Guilty as charged.  Still, no matter how subtle or well meant, it's hard to hear people offering you advice or words on how to deal with things.  Some days you really do want to get a medal just because you got out of bed, and brushed your teeth.  And you don't want to feel like people think you should join the support group they are suggesting, or that you should get out more, or whatever.

Seriously, maybe I should put up a chart for ME on the fridge.  Complete with stickers.  Got up?  Automatic sticker.  Took care of personal hygiene?  Another sticker.  Took Caeden "out" somewhere?  Three stickers for that one!  You know, it's not a bad idea and it appeals to my sense of ridiculousness.  Which is seriously pretty strong.  I have a really vibrant sense of ridiculousness, and maybe I need the smile each day when I see the chart.  And maybe I need the stickers too!

And yes, the most important part would be: read the Bible and talked to God this morning?  I know that is my lifeline.  And that reminds me.  Didn't do that yet this morning.  So I'm going now.  :)

The Global Foundation for Peroxisomal Disorders.

Just about the minute we got home from the hospital with Joel after his diagnosis, I was online, looking up information and support.  And so, very shortly, I was connected to an online support group, based on Yahoo.

Now, over two years later, I have some very good friends I met through the group site.  Mostly through the group site, I quickly learned more about Joel's disorder then most of our doctors knew.  And continued to learn.  In short, the group was an invaluable source of encouragement, support, and information.

Just recently this amazing group of people, spearheaded by those of us who excel in organization and "getting things done," has started a foundation and put up a beautiful website.   It's got official status as a charity, in order to receive donations.  We are hoping through the website that we will become better known and easier to access through search engines and word of mouth.

The mandate is to help and support parents, both emotionally, medically and financially.  And also to be a resource for doctors and professionals.  Like I said, I quickly learned more through the group knowledge of this disorder then most (if not all ;)  ) of our doctors knew.  We hope to share some of this group knowledge with medical professionals, some of whom have never heard of a PBD before.

I know the people on the board of directors.  They are amazing.  And I'd really like to support this group which has supported me so much through the past two years.  I too feel a great desire to help other parents dealing with a PBD. 

Of course, I  feel a bit limited right now in what I can do to help.  But one thing I can do, is ask you, my blog readers, to help.  Please take the time to check out our website.  You don't even have to donate, though of course, money is always good.  ;)

Seriously, though, since our website is just starting up, it hasn't gotten many "hits" and as my friend Shannon says, we are still in the "sandbox" of the search engine world.  Which means that you can type "Global Foundation for Peroxisomal Disorders" into your search engine, and I don't know how many pages down you'd have to go in order to actually see it.  This isn't very helpful to parents looking for online support.

So I'm going to put the link up here on my blog, once again.  And I'm going to ask you, if you think of it during the day when you are surfing around, reading the "news" stories, or playing on Facebook, if you could take the time to link there, and maybe even the time to try finding it in your search engine.  This costs you nothing but time, and if you are like me, you are likely wasting a few minutes on frivolous Internet stuff anyway (or maybe more than a "few" minutes), and it might really help a parent in the situation I was in two years ago, desperately searching for help and information for this terrible diagnosis you have suddenly been handed for your child.

So, I'm not too proud to beg.  Please, please, please?  Do it for me?  ;)

www.thegfpd.org

And see if you can find that picture of Joel I mentioned.  It's not on the home page, you have to look through the site to find it.  :)

Phantom Cats and Hollowness

Maybe I'll write, once again, about that fickle cat, Grief.  I mentioned how grief had caught up with me, and climbed up on my back like a great hairy ape.  It's a fickle cat-monkey, I guess.  And it is hard to describe this experience I am having right now, with this strange pet. 

I've said that things are "surreal," meaning to me that my brain has a grasp of facts that my heart has not.  In the strangest way, at times, because I can not believe Joel is gone, it is hard to believe he ever was here.  This is so difficult to explain, but I'm just going to give it a shot, anyway.  At times, I do feel that intense longing that we  call "missing" someone.  But, I think because it is so hard to understand that Joel is really gone, more often I just have this "hollow" feeling.

How to describe this hollow feeling....  I don't know.  It's a feeling that I SHOULD have a feeling, but....?  I don't know that I'd say it is excruciatingly painful, but it surely is uncomfortable.  Instead of missing Joel, it feels like I'm missing something more basic and fundamental.  I'm missing a feeling I should somehow be having, but it's just empty and hollow in that place. 

I actually prefer the crying times to this hollow feeling.  Though those can get pretty painful too.  I'm not going to say that I enjoy the pain that brings the tears.  But when the hollow feeling comes, then I seek ways to find the pain.  I'd rather cry than feel hollow.  I can go to Joel's crib and hold his blankets.  Look at pictures and videos.  Sometimes this works.  More often it doesn't.

In fact, this missing him almost feels more like he was erased all together.  Like I had something so beautiful and wondrous, but it was erased from my memory, and now all I have is this niggling feeling that I have lost something precious and special.  Maybe people with amnesia feel this way?

It's not that I don't remember Joel.  It's different.  It's that he's no longer HERE.  And because his departure is inconceivable, it makes his existence here at all seem somehow unreal.  Like he was a dream, a very good dream, but now I am awake.  Just like after a particularly powerful dream, I'm rubbing my head and wondering, "Did that really happen?" as it slowly fades away.

And so, at times, I chase down Grief, that great reluctant cat.  I dig for him under beds and couches, in pictures and drawers.  He dashes up the stairs, but once I get up there he has vanished.  I wish to catch him, even to be clawed, because the thing is, pain is so real.  And if I feel pain, then I know that Joel was here, deep in my life and my heart.

Of course, you know that I don't seriously doubt Joel's existence for a minute.  I'm just trying to describe what is so indescribable:  FEELINGS.  The new and strange ones that don't have a simple label like "anger" or "fear" or "happy."

These particular feelings, the ones where I feel a hollow feeling, a fading dream sadness, a feeling amnesia, these feelings are why I love to be able to talk to people about Joel.  Talking about him to someone places me on a solid foundation.  Remembering him, and sharing the happiness and the pain of life with him makes it more real.  Someone has caught that naughty nasty kitty, and placed him squarely in my arms.  Here he is, he exists, I have a hold on him, he is not a phantom cat, but real.  And thus Joel's life with us is firmly real too.

And if I every finally catch that querulous old tom firmly enough to really feel racked by grief, to sob great gusty sobs, to FEEL the pain for awhile so strongly, then for awhile, the hollow dream fading sadness leaves me...  And that is a relief.

Oh, yeah, and here is a picture or two.

Ok, here are the pictures of Joel's Garden that I said I'd put up.  Typically, out here planting season doesn't start until at least May, and according to local wisdom, putting plants in shouldn't be done until after May long weekend, though seeds of course are fine before that.

So you are going to have to really use your imagination, as things are looking a bit brown, blacky and "dirtish" right now.  Still, I think it is a beautiful place, and today again I could hear the frogs peeping.

Garden

Today it is one month from the day that Joel died.  A day I still don't like to think about.  It just hurts too much.  This whole thing still seems to be categorized by that word "surreal."  A word that simply means that your mind has grasp of the facts which your heart as of yet has not.

I'm guessing that many of you expecting me to write yesterday or tomorrow about Easter and how I feel about it and what it means.  Today, a month after Joel died, and in between Good Friday and Easter, this seems appropriate.  So Easter will come in here.  There are just so many things I want to say, that this might end up more of a jumble than anything coherent. 

I'm glad the closest holiday to Joel's death was Easter.  It is the one holiday that does not really feel somewhat "tainted" by Joel's death.  I know that they will be hard days, Mother's Day, and my birthday, and Thanksgiving and Christmas.  But Easter seems better, even though the simple fact that it is now April 23rd has reduced me to tears. 

It seems better, because now Easter has another special joy attached to it.  Yes, a joy.  Even in the pain and sadness.  I feel a special joy at this holiday because I think of Jesus, in his resurrected body, eating fish and inviting his disciples to touch him and see he is "real" and not at ghost.  And I think of Joel, seeing him too one day in his new body.  Easter encapsulates the year long celebration I have.  I'm just celebrating a future day. 

Like a bride, looking forward to her wedding day.  That's me.  Looking forward to a special day in the future.  And Easter is a special holiday because of this.  I should be remembering and celebrating the Resurrection every day.  And I try to.  But there is something very good and special about a whole weekend to do this...

On the other hand, it seems to me appropriate to write about Easter today, the Saturday between Jesus' death and Resurrection.  Because that is where I am at with Joel.  I am between pain and sadness, and the realization of my hope.  I'm in the day "between."  I have certainty, but I also have sadness.  A good day is coming, but it is not here yet.  This is where I am at, on this day one month after Joel is gone.

Since this morning was so nice, and tomorrow afternoon has given no such guarantee, we went out to Joel's grave this morning.  That seemed, once again, somehow appropriate.  We brought out a few more solar lights (a matched set of four to replace the two I had previously set out).  They are very pretty.  We brought out a lovely metal butterfly, yellow and green, on a stake so that it can be seen from afar.  And we also had a wrought metal stake to hang up a very pretty hummingbird feeder.  I don't know if we'll manage hummingbirds there or not, but the feeder is so pretty.  It is a blue, blown glass globe.  And we put out the little gray "stepping stone" with a letter "J" raised on it. 

I forgot to bring a camera, but I will next time.  Even with the bare dirt, it looked really pretty.  Because it looked like the start of a garden.  Which is it. 

I'm going to make it a little miniature garden.  Once there are bright flowers surrounding the stepping stone, it will look so amazing.  I'm going to plant a lot of petunias in the hopes of hummingbirds, which, if you remember a previous blog, are very special to me.  I can't wait.  But I must, because the grave hasn't settled yet, and once it does the cemetery will put some good topsoil on top for me.  And I'm going to plant the whole thing with flowers.  You betcha.  And then I'll put a picture up, to show you.

I know Joel isn't there.  I don't really know what he is aware of in heaven, if he can actually "see" what I have done from the plane or dimension of existence he is in how.  But that doesn't matter.  I'm not so much trying to do it "for him," as I am just doing it as a remembrance OF HIM. 

Maybe it seems odd, but I don't find the cemetery a really sad place, though of course, I always cry when I'm there, because Joel is not with me.  Graves really are connected in my mind AND heart, with the grave that Jesus walked out of.  And that connection makes Joel's grave a lot different that just a place where we put his body when his life was over. 

And the cemetery where Joel's body lies is a pretty, little, simple, country cemetery.  There are geese honking.  And birds singing.  And frogs peeping now, in the spring.  There will be a garden on his grave.  Just like the garden in my heart.  A garden where "dead" seeds have come to life, and flowers bloom.  And when I'm there I'll be always remembering that the Resurrection is coming.  It's a remembering place, and a hoping place.  And oddly, though it makes me cry, I like to go there.  It is peaceful, and hopeful, and love-ful, and joyful.

And now, please humour me.  I find I just have this yearning to share my pictures of Joel, now that they are all I have of him.  So I think after each blog, I'm just going to tack on a picture.  Just because.

Ok, maybe three pictures.  Happy Easter!  He is risen!  He is risen, indeed!

Story Time: Part Two

This is the continuation of the previous blog.  Read that one first.  ;)  I will, of course, be putting more pictures into the book.  But I did want to put in a few here, for you to see.  :)  Sometimes grown ups like pictures too.

The Story of My Family

Before I was born, my Mommy and Daddy met each other when they both started teaching at the same school.  When they met, they liked each other.  After awhile, they really liked each other.  And after awhile longer, they loved each other.

And that is when they decided they should get married, and be a family together.

For a little while, it was just my Mommy and Daddy.  Then they decided that they would really like to have a child to be part of the family too.  And so I, Caeden Kenneth Merton Smith, was born.

It wasn't too long until my Mommy and Daddy decided that a brother or sister should also join our family, and soon we were waiting for a baby to come.

But then a sad thing happened.  When a baby is making it's body, it needs some instructions.  So the Mommy gives the baby a set of instructions, and the Daddy gives the baby a set of instructions too.  These instructions are called genes, but they are not made of cloth, like pants are. These genes are made up of something called DNA.

The gene instructions tell the baby how to make a heart, and a tummy, and all the "inside of them" stuff.  And they tell the baby how to make arms and legs, and eyes and ears.  They even tell the baby if their eyes should be blue or brown, and what colour their hair should be.

Something sad happened when our new baby was getting instructions on how to grow a body.  There was a mistake in the instructions Mommy gave the baby.  And there was a mistake in the instructions that Daddy gave the baby.

So when the baby was trying to grow a body, the body could not grow right.  The only instructions the baby could find for making a part of the body called peroxisomes, had mistakes.  And so when the baby made peroxisomes, they had mistakes too, and could not work right.

This baby was my brother, Joel.  When my brother Joel was born, he had this problem with his body, called a PBD.

I was a good big brother.  I helped my Mommy by getting her blankets, or a soother for baby Joel.  I tried to be patient and wait my turn, when my brother was crying.  And I talked to my brother and brought him toys.  I even turned on his music for him to listen to.

Mommy, Daddy, and I loved Joel.  And he loved us too.  He really liked to hear my voice.  And he especially loved it when I had friends over to play.  He loved to hear our games.  And every night I would kiss him good night, and Joel knew that I loved him.

Even though we loved Joel, something sad was happening.  Because of the mistakes in his body, because Joel's peroxisomes were not working right, his body got more and more broken.  Even the doctors could not fix this.  They did not know how to give his body the right instructions to work properly.  Everybody tried really hard to help Joel's body, but no one could fix this problem.

One day when Joel was two years old, his body got so broken that it stopped working.  And Joel's body died.  So Joel left his body behind, and God took him up to a new home in heaven.

Everyone was very sad when this happened.  But Mommy and Daddy were also glad that when Joel's body stopped working, God took Joel to heaven to be happy and safe.

One day we will all be together again in heaven.  Until that day, Mommy, Daddy and I will have lots of other adventures.  Who know what will happen next in the story of my family?



Story Time

Yesterday I went to a mom and preschooler event with Caeden called "Purple Stew."  It was... good?  How can I really encapsulate it in a word.  Ok, let me tell you all about it.  No scratch that, let me just tell you about the parts I think are interesting and want to tell.

It was good to be there with Caeden, and feel like a "regular" mom.  It was strange.  Very strange.  I wonder if it was a little bit like a parolee feels like?  Sort of awkward and strange.  Free, yes.  But not altogether comfortable there.

And it was ok until a couple of songs into the singing in a circle time.  Just was thinking.   Thinking about how I was there because Joel was not there.  And how I'd never get to do singing in a circle with him.  How sad it was that this was the first time I was doing something like that with Caeden.  But mostly just feeling how I was there because Joel was not there.  And it almost tipped me over into some good ole tears and sobbing, but I managed to stave it off.

The rest of the time went ok.  After the singing, and a story reading time, the kids did a snack and craft, and the moms got to go do some coffee and a "parent project" (read craft for big people).  I felt slightly awkward, once again.  I ran into someone I had known long, long ago.  She obviously didn't know anything about Joel.  She just mentioned how she'd never seen me there before and did I live in the area?  I just said that I lived nearby, but had been somewhat housebound, and the subject was dropped.

I hadn't expected that.  It all blows me away, how I can walk into situation after situation completely unprepared for it and how it all is unexpected.  Why didn't I think a bit more about how or what I would say in these situations?  Well, I don't know.  I do think about it, but then it's all different when it happens. 

Or more often it just seems that life happens to fast for me to figure these things out before they happen.  When you are grieving, there sure is a lot to think about, and then again, sometimes you just don't want to think about it either.  And in the midst of it you forget things like what you'll say when you meet someone you used to know before your terminally ill child was born and then died, and you just are a bit at a loss.

I do know if people ask, I'm going to say I HAVE two children.  Because I do.  Joel's body is dead.  But he still exists, just in a place I can't see or touch him.  But he has not been erased from existence.  And he is still my child.  So I HAVE two children, the oldest one is four, and the youngest one is in heaven.  That's what I'm going to say.  And I'm going to look them in the face even if there are tears in my eyes, but there will still be a smile on my lips, and it won't be fake, either.

This is all leading up to something a bit different.  You see, one of the parent projects was to make a book for your child.  A book about favorite and healthy foods.  Or whatever.  I took the "whatever" option.  I'm going to make Caeden a book.  With great originality I'm going to call it "The Story of My Family."  And yes, I'm even going to work on this book THERE.  Yes.  THERE.  In front of the other parents.  Though I typed out the story here, so I'd have the time and emotion to get it "right."  And so I could get most of the tears out.  But I AM going to put it together there.  And I AM going to let the other moms see it or read it if they ask.  This is NOT taboo.  It is a part of being human.  I'm NOT hiding it.

I'm very pleased with this book idea.  I think it will be really good and helpful to Caeden.  Because he needs to be able to read and "learn" the story of us.  Much of my memory has been wiped from stress and sorrow, and there is a part of it that I only have because I rehearsed it over and over.  I learned the story.  So now I know the events, even if in my mind's eye they are a bit cloudy.

And I want Caeden to have this too.  I know his memories will grow dim.  I want to allow him to rehearse the story until he OWNS it.  And I want to fill in the gaps.  And put it the events in a story where they make sense.  A book, with a story and with pictures.  Because he gets tired of hearing about Joel, and he's only growing into the attention span needed to really get the whole picture.  This is the easy way for him to be able to do it.

Easy.  And the book with have pictures of Steve and Joel and I.  But mostly there will be pictures of him and Joel.  To have for his own.  Mementos to prove he was an important part of what happened.

Also, I will be providing him with the vocabulary and thought processes to be able to talk about Joel to other people.  So that he can be at less of a loss himself on what to say.  I'll be giving him the answers to some of the questions other people might ask him, but again, in the best and easiest form for a four year old to manage.  A story.

I feel so relieved and pleased, like I'm giving him a very good gift, that I want to share it with you.  In case there are any of you who read this and are in the same situation, and you'd like to try this too. 

The school has the stiff paper and scissors and glue all there, but this isn't hard to do.  I wrote the story up on the computer using a nice large font.  I printed off some favorite pictures just using regular paper.  Then it will all get glued onto the stiff paper pages.  I think I will put some clear "mac tac" over the pages so they don't get ruined by a spill.  And then I'll get the holes punched in and a coil book binding thingy.  Sorry, my teacher vocabulary has left me.  It won't be professional of course!  It will be personal, and heartfelt.  And Caeden will love it, being in his very own story book, pictures and words and all!

I am going to write out my story in my next post, so you can read the "story" part.  I think it might be a bit time consuming and tricky to put in the pictures, but I might try and do that too, if I feel like it... or at least some of them, anyway.  I hope maybe it helps someone else out there.

Names: Part Two

The sun was out today, and that was a start to feeling a bit better.  But it seems that this week grief finally caught up with me.  Not like a roaring lion pouncing and devouring.  More like a big hairy ape that keeps dragging at your heels until finally he manages to crawl up your limbs and settle on your back.

So, I could fill this blog up, as I have said before, with telling you how each morning before I get up, I see in my minds eye my sweet little boy's sleeping face.  And how I think of the good mornings where he'd make his happy wake up burbles.  Even when they happened at 6AM, they made me smile.  They were so beautiful.  And I'll never hear them again on earth.

And I could tell you how I get up and go over to the crib and desperately sniff at the blankets and bedding to try and get the smell of my little boy.  But I really can't.  They were, sadly, too clean when Joel died.  Not much of his smell is left there.  But boy, did he ever smell good.  I used to just sit and put my nose to his neck and his head and just smell the smell of him...

You see how this could go?  I could fill pages with this sort of thing.  This is the sort of thing that goes on in my heart all day.  I'm just telling you this so you know.  I don't want you to think this ISN'T happening.  I'm just trying not to fill up blog after blog about it.

So in the name of transparency, I'm going to write about a different struggle that was revealed to me this week.  It doesn't make me sound as sympathetic.  But it is a part of this road, so I'm going to share it.

I know I have said before that I'm one of those "people person"s.  And that one thing I have always struggled with is that I want EVERYONE to like me.  Yup.  Everyone.  My neighbours, my doctor, the waitress in the restaurant, my distant relatives, people next to me on the bus, the list is endless.

And there have been so many hard things going on over the last two and a half years, that I sort of didn't realize something that was happening to me.  I was starting to rely on a crutch.

You see, I got the title of "Joel's Mom."  I wrote a blog or two about this, way back a year or so ago.  There were different emotions and questions that went along with this title.  But there was an aspect that I never fully realized or explored at that time.

I was "Joel's Mom."  And I was special, because Joel was special.  And everyone HAD to like me.  Because if you can't like or say nice things about the mom of a kid whose terminally ill, then you feel like a real meanie.  (You know what I mean, but I don't use that sort of language.)

So everyone had to be kind to me.  They had to give me leeway.  And they really had to like me.  How could you not like someone with a dying child?  How could you say anything mean?  Or critical?

In fact, sometimes there was a respect or a reverence.  Which made me uncomfortable.  Because I knew deep down that I put my pants on one leg at a time.  And that who I really am was no better than anyone else.  Still, truth is, it felt nice.  I might not always feel like I fit in.  I might not always feel that people really understood.  But - people RESPECTED me, even if the respect was a bit misplaced.  Even if I felt like a fraud, it was nice to know that I was a fraud that everyone liked!

I was the wizard of Oz, before anyone peeked behind the curtain!  People were often asking me how I "did it?"  It felt nice, even as it felt uncomfortable, or a bit worrying.  How long until they discovered I was a humbug?

And I felt special because of Joel.  I didn't have to worry about people liking me, because of Joel.  Joel made me immediately likable.  I was "Joel's Mom."  Men holding babies are irresistible to women.  Moms holding dying kids are just irresistible to everyone!

And now, who am I?  Yeah, I even hate the question, but really, who am I?  I know, I know, I will always be Joel's Mom, but now it IS different.  I'm not the mom of a terminally ill child.  I'm just an ordinary mom.  An ordinary mom who had lost a child, yes.  But as time goes on, people forget that.  It's in the PAST.   Joel was ONGOING.  Joel's death is OVER & DONE.  It won't happen right away.  But it's already started.  As I meet new people, they will see me differently than the new people I meet 3 months ago...  And in time, even the people I know now will feel that Joel is a PAST event.

And I realized that now I felt insecure.  Would people still like me?  Now if I say something stupid, will I just be stupid?  Now if I'm self-centred, will I just be annoying?  Now if I can't get things done, will I just be disorganized or lazy?  The fail-safe is off.  And I'm afraid of failure.  And I'm afraid of criticism.  And I'm afraid that now people won't think I'm special, and now that they don't have to like me, they no longer will.

Sure, you might think this is all messed up insecurity, but then, I also know that there are a lot of you out there who struggle with this.  So I'm being sincere, about my struggles.  And I know too that my friends are out there saying that I'm still special to them, and outside of Joel, and all that.  Thank you, and I appreciate you and your loyalty.

I'm just sharing how God revealed some of the source of some of the "bad" feelings I was starting to have.  I feel, in some ways, that I'm starting over, but not so much in a fresh and new way.  In a "learning to ride a bicycle with only one arm sort of way."  Well, the truth is, I was always a bit of a cripple here, but I learned to use a crutch, and now the crutch is gone.  Bit of a reality check.

So I had to go on a long walk with God yesterday.  And have a heart to heart with Him.  And know that once again I am learning to stop thinking, always thinking, about myself.  And remember that real confidence comes from trusting that God loves me as I am and His approval is what really matters.  And based in the reality of His unwavering love, I can start focusing on other people.  I can remember that what matters isn't what people think of me, but what I think of them.  God never commanded "Have people love you."  He said "love your neighbour as yourself."  Regardless of what your neighbour thinks of you. 

And here is where the real freedom lies.  I know this.  I do.  I don't need (and shouldn't crave) to be special to other people.  I just need to be special to God, and then to go on and make other people special to me.

For awhile, I'm going to be a little off balance.  In a lot of different places.  And one of those places will be in feeling a bit insecure.  Or even a lot insecure...

I confess, I hope you'll bear with me.  I further confess, that I hope you will like me!  But in any case, even if I am no longer sure if people still see me as "Joel's Mom," I know that God still sees me as His child.  I'm learning, once again, to hold on to that.

And in the midst of all that, just writing all that, it makes me feel it so strongly once again.  Joel, I miss you so much.  And not because you made me special.  Because I love you so very much...

My Reverse Bucket List

Yup. The last few days have been very difficult emotionally. I have just been missing Joel so very much. And there isn't too much I can say about that, really, that wouldn't likely get fairly boring for you, fairly quickly. So, I will just say, please keep the encouragement and prayers coming. `````````````````````````````````````````````````````````````````` And then, instead of boring you with writing "I miss Joel" a hundred and two different ways, I'm going to try and cheer up a bit, by writing a "bucket list blog." Bucket lists are pretty in, eh? And somewhat cool? ````````````````````````````````````````````````````````````````` Only, of course, I never have made a bucket list. I really couldn't come up with that many things that I'd like to do before I die, and that I'd be willing to work towards doing. I mean, I'd love to travel to quite a few places. If I won a free package. But not if I have to work really hard to save up the money for years in order to do it. Ya know? Some would say this reflects my unambitious natures. Others less kind would say I'm lazy. ````````````````````````````````````````````````````````````````````` I'd just say that I haven't found many "bucket list-worthy" things that I'd really like to do. Either they are a) too boring, or b) too easy, or c) things "everyone" has done. And mostly all of the above. ``````````````````````````````````````````````````````````````````````` Of course, you know I'm going to say this, right? The only truly bucket list worthy thing I can think of, is live my whole life under God's direction. I hope if you are one of my atheist friends you are not groaning now. ``````````````````````````````````````````````````````````````````````` Anyhoooooooooo... I have gone on enough in this preface. Time to get to my reverse bucket list. It's a reverse bucket list, because these are all things that are one or all of the following: a) unplanned by me, b) not something I WANTED to be involved in c) probably not something anyone else would thing was a good thing. ``````````````````````````````````````````````````````````````````````` It's not a list of things that I wanted to do before I die. It's a list of things that it appears God wanted me to do or experience before I die. And while many of the things on the list might appear a lot less fun then say, skydiving or rafting down the Grand Canyon, or whatever, I have to say that each one of them, I'm thankful for. ```````````````````````````````````````````````````````````````````````` Looking back, I can only say that I am happy with my life. It seems to me that it has neither been boring, nor uneventful, though by many standards it might be considered so. It's the life God has given me, and I LIKE IT. ````````````````````````````````````````````````````````````````````````` So here it goes. My Reverse Bucket List. ````````````````````````````````````````````````````````````````````````` 1. Be a foster sister. This was an awesome and life changing experience. ````````````````````````````````````````````````````````````````````````` 2. Go to a Bible college for three years. And no, I didn't learn ANYTHING that helped me with a career. But yes, I did learn so much that helped me with life. ````````````````````````````````````````````````````````````````````````` 3. Live for a year in the resort town of Banff. I got to go hiking and climb mountains. I got to live with an "eclectic" group of young adults in a staff accommodation know as the "Rat's Nest." (don't ask) At one point, the apartment I lived in was known as "The House of God." (thanks to one of my atheist friends) This year led to the following listing: ````````````````````````````````````````````````````````````````````````` 4. I got to save some one's life. Yes. I really did. I don't know what God did with and for the person after that, but I got a chance to save some one's life. It doesn't sound too heroic though, when you hear what I really did. I didn't risk my life or anything. Still, it required me to do something which was quite scary for me at the time. It required that I interfere in another person's life, even though they screamed and swore at me to leave them alone through a locked door. Even though they would not look at me or speak to me the entire car ride to the hospital. But afterwards, after they had pumped her stomach and she really had taken a life threatening dose of medications, afterwards she thanked me. She was very grateful. And I am awed that God gave me the chance to do it. ````````````````````````````````````````````````````````````````````` 5. I got to quit a job because policies changed, and in order to make sales, they wanted me to lie to customers. At the time this was frightening and intimidating. It was also an experience I'm so grateful I had. One of the best things I have ever done. Almost everything you have can be taken away. Health, money, jobs, loved ones, it's a long list. But one thing that can never be taken from you is your integrity. I think that makes it priceless. Something to think about, before you sell it cheaply. (by the way, not saying I'm perfect here. This is just an example of when I did it right.) ``````````````````````````````````````````````````````````````````````````` 6. I got to work on a reserve up north. For three years, I was on a reserve so isolated that you could only fly in for about 9 months of the year. I won't relate the whole story. This is already quite long. I'll just say, it was not planned, it happened very quickly (within about a month I went from "never going to do that" to "I'm landing at the 'airport'") and it was one of the best things I've ever done. My favorite part was getting to help lead a youth group, and giving the "God Talk" each week. ```````````````````````````````````````````````````````````````````````````` 7. I got to ride in an ambulance. ```````````````````````````````````````````````````````````````````````````` 8. I got to see inside the neonatal ICU for several days. ```````````````````````````````````````````````````````````````````````````` 9. I got to see a spinal tap, an MRI, an EEG, a CAT scan, the "surgery process," hearing tests, an ENT scope, photos of my child's retinas... have I missed anything? ```````````````````````````````````````````````````````````````````````````` 10. Oh, yeah, I got to be part of a "family conference," the kind where you hear the BAD news. ```````````````````````````````````````````````````````````````````````````` 11. I was privileged to get to know many, many tough and compassionate parents fighting in the trenches of childhood disability and terminal illness. ````````````````````````````````````````````````````````````````````````````` 13. I lived with a severely special needs child. ```````````````````````````````````````````````````````````````````````````` 14. I journeyed with that child through his life, and dying. ````````````````````````````````````````````````````````````````````````````` 15. I got to be Joel's mommy. Wow. `````````````````````````````````````````````````````````````` What else can I say. There is less and less explanation as I go, because it is harder and harder to explain what this sort of "bucket list" experience has given to me. Well, in part I have been explaining it to you here for over a year now. And there are pieces of this bucket list experience that even I have not yet discovered. `````````````````````````````````````````````````````````````````````````````` This life was never boring. I'd like to think that these experiences have been used by God to shape my character in ways that even hiking the Himalayas, or travelling around the world could not. But there is still much work to be done there. In any case, I feel like it's been an eventful life so far. ``````````````````````````````````````````````````````````````````````````````` And as I look over the list (which I have actually shortened, ;) ) of both great and small, I can only say that every single thing that God put on the list of things for me to do before I die, every single one of those things was worthwhile. I have no regrets, at this point in my life. May it be always so. And thank you God, for Your "Bucket List."

Stones

I've been thinking about how to describe what it is like to live with someone with a progressive illness. No, not just someone. A loved one. What it is like to live with someone you love very much who is terminally ill. ```````````````````````````````````````````````````````````````` Of course, in trying to describe that experience, I'd have to cover a lot of different journeys. Because sometimes they can be very different. People can be told they have two weeks to live. And people can be told they have ten years to live. And every illness has it's own particular symptoms and difficulties. So it might be sort of arrogant for me to even try and explain it. ``````````````````````````````````````````````````````````````````` Still, I want to try and describe it a bit. So, here goes nothing! `````````````````````````````````````````````````````````````````` Imagine that out of the blue, you and a loved one, your mate, your child, your sibling, or a parent, just pick someone close to you, and imagine that you are picked up off the street one day and taken to a strange and secret destination. A country you have never been. ``````````````````````````````````````````````````````````````````` And your captors tell you that you and your loved one must now start a journey before YOU can return back to home and "your life." Your loved one, however, will NOT be allowed to return with you. You are assured that your loved one will be released as well, free at last, but can never return to your own country. The moment you have finally finished this journey and are about to be released, you will be forever parted from them. These are the conditions of for both of you to eventually be released: separation. ```````````````````````````````````````````````````````````````````` Added to these conditions, they continue to explain, you will need to stop off along the way at certain check points where you will be directed to the next step. They refuse to tell you how long this journey will be exactly, or what places you are travelling through, or much of a description of the terrain. Though of course, you know that captors this cruel will not make any of this easy. ``````````````````````````````````````````````````````````````````````` So you set out on your journey. And while you travel you discover another rule. You are allowed to eat good food and enough of it. But your loved one only gets a meager diet which can not really give them much strength. And so, as time goes on, they become more and more tired. You wish very much that you could give them some of your good food, but this is not allowed. Instead you must watch them, helplessly, as they grow weaker, and weaker, but must continue on this journey. ``````````````````````````````````````````````````````````````````````` Then you start coming up to the "checkpoints." And you discover at each checkpoint there is another rule in place. At each checkpoint, you discover one or two large stones. At times, you both must load a stone into your pack. At times, you are allow to carry the stone for your loved one. You do this gladly, afraid to complain about it, happy to somehow ease the burden. Many times your captors allow you to take the stone, instead of giving to your loved one. But every now and then, no matter how much you ask, they force your loved one to carry another stone. You can do nothing but watch them struggle to manage. And sometimes, as I have already stated, you both must carry a new stone. `````````````````````````````````````````````````````````````````````` Sometimes the terrain is rough. Sometimes it is uphill. Other times it seems flat and almost easy. And you never know, from day to day, what sort of places you will be travelling through. But no matter if the road is harder or easier, you know it is invariably leading one direction: AWAY from your loved one. `````````````````````````````````````````````````````````````````````` And so you journey along, for days, and days, and days. At every checkpoint there is ANOTHER stone. And as time goes on, you are getting more and more tired. Things are getting harder and harder, but you don't know how many more checkpoints or stones you'll have to bear. With every step, you get stronger at carrying the stones as well. You find yourself in a strange and precarious balance between learning to carry more and more rocks and being able to do so, and between becoming completely exhausted and worn out beyond bearing. Sometimes you think the tiniest pebble might upset that balance. `````````````````````````````````````````````````````````````````````` But you do your best not to focus too much on yourself, or be too negative, because your loved one must do this journey too, and on half rations. You try, amidst stones and hunger, to enjoy this journey somehow. Because at the end, you return to your "normal" life, but at the end, you will not see your loved one again for a long, long time. And so, you must find precious moments here, you must share love and joy somehow in spite of the burden you carry and the pain you see on the dear face beside you. Somehow this journey is precious? Because it is the last one you will get with your loved one, stones and all. ``````````````````````````````````````````````````````````````` I think telling you that this journey with a degenerative illness is like carrying a backpack that keeps getting loaded with another rock, all the while seeing your loved on forced to continue on with half rations, I think that is the closest analogy I can think of for what it is like. ``````````````````````````````````````````````````````````````` If you know me well, you may have noted that I didn't mention anything about God in this analogy. Well, I was trying to explain what something very difficult is like. I wasn't trying to explain what having God beside me every step of the way is like. That would be a very different analogy. ``````````````````````````````````````````````````````````````` I can tell you that my strength to carry those stones came from the Lord. And if you don't believe God exists or is involved personally in life here on earth, you will just attribute this to a religious and "modest" view of myself and the world. You will think either that I just have some sort of strength of character that I mistakenly attribute to a Supreme Being. Or you will think that I get strength through my religious beliefs just because I have them. Sort of a placebo effect, I guess. `````````````````````````````````````````````````````````````````` And I'm not sure there is any analogy in the world that could convince you otherwise. Certainly, I do know other people who don't believe God exists and they somehow make it through the journey, with all the stones, and with the terrible loss at the end, and they still manage to be loving people who do many good things. I have to grant you that. `````````````````````````````````````````````````````````````````` I really don't know HOW they do it though. It really baffles me. Honestly. I can only say that they must be kinder and stronger and less selfish that I would naturally be. `````````````````````````````````````````````````````````````` And all I can proclaim to you from the bottom of my scrappy, hard-headed, willful, loud-mouthed, and selfish soul, is that I really couldn't have made it with out HIM. In surrender to Him, peace. In admitting my weakness to Him, strength. In crying out to Him, comfort. In being forgiven, freedom to forgive. In being loved by Him, freedom to love. ``````````````````````````````````````````````````````````````` Yes, I still carried those stones. There are some beautiful verses in Isaiah though, were God says He has carried Israel from the womb, until old age. He says He has made, and has carried, and will carry them. And while I carried stone after stone, God Himself carried me. ``````````````````````````````````````````````````````````````` As He also said in Isaiah: "I will not forget you. See, I have inscribed you on the palms of My hands." (Is.49:15b-16) And did He not do so, with a nail instead of a pen?

Gave Back the Equipment and Kept the People!

Today was another day with an equipment pick up scheduled in. After the last one, I had some ambivalent feelings about what I thought today would be like. In fact, it seemed like it was more difficult than even handing over Joel's equipment. ````````````````````````````````````````````````````````````````````` Because our case manager, and the palliative care nurse, and one of the palliative care doctors were all coming over too. And it occurred to me. This time I'm not just giving up the inanimate machines that were part of life with Joel. This time I'm giving back people! ``````````````````````````````````````````````````````````````````````` Which is even worse. I've already written about giving back the equipment, and how it feels like you are losing a part of the presence of someone you love, even though you know it's ridiculous to think any part of them resides in MACHINERY. But it still feels like such a FINAL disconnection. ```````````````````````````````````````````````````````````````````````` And these were not machines. They were people who had been part of our lives for a long time. They had seen us at our worst. They held memories of Joel inside them. They had been supports in time of need. Sometimes they understood what no other people seemed to get. They were not electronics and wiring. They were flesh and blood. `````````````````````````````````````````````````````````````````````` And they were a part of the story of Joel. A story which I don't want to believe has ended, and indeed, it hasn't. It's just another section, a different chapter. But writing these characters out of the book seemed like an obliteration of previous chapters... well, what am I say? How can an analogy prove my point? These were people, real people, and they had lived with us through much of our journey with Joel. Letting them walk out the door so finally seemed...??? `````````````````````````````````````````````````````````````````````` It did seem like letting part of Joel go. For sure no part of Joel remains in a machine, but for sure some part of his life and existence touches those who knew him, and how could I let that part go when I no longer had him here with me? It did feel like a very real connection to Joel was done and ended. These people had a share in a very special and sacred thing. They had a share in Joel's life, and in his dying. ```````````````````````````````````````````````````````````````````````` I felt sad. Can I underscore that? Sad is such an insipid little word. A weak tea word, but the feeling I had was like very strong and black coffee. I was pretty sure when they walked out the door I would go to a corner and cry like a baby. ```````````````````````````````````````````````````````````````````````` But during the visit I learned that I didn't have to "return" these people with the equipment. They invited me to keep in touch as I wished to, and even offered to come out for a visit again if I liked. In fact, our case manager asked if it would be ok for her to check in on us from time to time for the next year. So I said "Sure!" This was all I needed. `````````````````````````````````````````````````````````````````````````` I gave back the equipment. This time I didn't even really feel sad as I saw it go out the door. I gave back the equipment, but I'm keeping the people! Turns out I didn't go to the corner and cry like a baby after all. People are a very fine thing to keep.

Reserving the Right to Change my..Everything???

What can I even say about the last week....? So much to say, so few words that hit the target... ````````````````````````````````````````````````````````````````` Well, there is one thing I can warn you about. I have decided for the sake of honesty and directness and my own sanity to warn you about something. And that is that I'm going to be reserving the right to change my mind, and I'm going to be pretty liberal with that privilege. ```````````````````````````````````````````````````````````````````` Here is the thing. I don't know what the expectations are for me. And I don't know if I can or should meet them anyway. This is sort of a new country for me. Not grief. I have been through grief before, a long time ago. But that was a different circumstance, and doesn't really inform this one when it comes to expectations. ````````````````````````````````````````````````````````````````````` What I mean is, there are expectations on me every day. I'm expected to feed my family. And I agree to that expectation. I'm expected to flush the toilet, and I should and do. I'm expected to wear clothes and not go out in underwear and a trench coat. Check and my whole-hearted endorsement of that one. ````````````````````````````````````````````````````````````````````` I knew the expectations before, and most of them I thought were valid and agreed to meet them. Some of them I even put on myself. And if exceptions were needed, I knew how to negotiate them with myself or with others in a satisfactory and "fair" way. ````````````````````````````````````````````````````````````````````` Now, though, I sort of feel that all the previous expectations of how I would think or act are sort of not too appropriate. I guess that in some ways this had been the case ever since diagnosis. But Joel's very presence sort of was proof of that. Obviously I couldn't just go out like before, or promise to make a dozen cookies for Sunday School every week, or whatever sort of thing. `````````````````````````````````````````````````````````````````````` But now Joel is gone. I am at a loss. What sort of behavior do people expect from me? What do I expect from myself? I honestly don't know. Sometimes my reactions moment to moment surprise me. I might even be in the middle of something, and realize, hey, I'm not sure I'm up for this right now. `````````````````````````````````````````````````````````````````````` If I don't burst into tears this week, does that mean I'm not allowed to do it next week either? If I go to a party next week, does that mean now I have to go to every one's party, every time? If I burst into tears seeing healthy, happy kids one day, will everyone start watching like a hawk every time I'm around them? `````````````````````````````````````````````````````````````````````` So, I'm reserving the right to change my mind and the expectations. I really don't know that anything about how I feel or cope is "stable" right now. Hmmm, maybe bad choice of word, "stable." I'm STABLE. I'm just in a fluctuating state. Called "grief." `````````````````````````````````````````````````````````````````````` Which means that some days I might be able to go out. I might seem inappropriately happy, or gleeful. Because I might just really need to get out and forget the sadness. Please don't judge me and think I've forgotten Joel, or that I'm suppressing my feelings, or that I'm in a manic state. `````````````````````````````````````````````````````````````````````` And then some days I might need to stay home. I might need to wear my pjs. I might need someone to take Caeden out, so I can sit with greasy hair and watch videos of Joel over and over again while the pile of used Kleenex grows every larger. Please don't think I'm "wallowing" in self-pity, or that I'm clinically depressed. `````````````````````````````````````````````````````````````````````` Some days the house might look surprisingly good. And some days it might look like trolls live here. `````````````````````````````````````````````````````````````````````` Some times I might answer the phone. I might sound "chipper." Or you might just get the answering machine. You likely won't hear me answer in a wobbly voice. I'll just let the machine get it. `````````````````````````````````````````````````````````````````````` I might be up for volunteering and helping out with stuff. You might be worried about that...? I don't know. I hope you'll let me try and do things if I feel like I would like too. And sometimes you might ask for help with something simple, but I might say maybe another time. I hope you won't think I'm "shirking" then. `````````````````````````````````````````````````````````````````````` Please don't feel hurt if I go visit someone one day, but when you ask, I just want to stay home. It won't be because I don't love you. It's just because. `````````````````````````````````````````````````````````````````````` Even though I have grieved before, everything about this situation is new. And sometimes I admit I feel a little angry or resentful if people expect me to act a certain way or show a certain attitude or emotion. This part is under construction, and under God's grace I'm gaining peace with it. ````````````````````````````````````````````````````````````````````` Still, it would hurt me to think either of two ways. I would hurt me to think that people thought I was handling this "surprisingly well." And it would hurt me to think that people thought I was handling this "badly." Just think I'm handling it with God's help, and leave it at that. ``````````````````````````````````````````````````````````````````````` Because if I'm handling it well, I feel like there is something wrong with how much I love Joel or how much I miss him. It's not rational, I know. But that is how it feels. ``````````````````````````````````````````````````````````````````````` And if I'm handling it poorly, well, that doesn't feel so great either. I know other people are counting on me and I can't afford to be a basket case. ```````````````````````````````````````````````````````````````````````` So here is what I will tell you: Expect the UNEXPECTED. And I'm telling myself that too, since I've already surprised myself numerous times. ```````````````````````````````````````````````````````````````````````` Other than that, I'm keeping it this simple: Every day I'm waking up and trying to read my Bible and talk to God. And then I'm leaving the expectations to Him. I'm just telling Him that I want to be able to do whatever He wants me to do. I'd like to be able to do even just one positive thing each day, but on His strength and under His direction. I'll let Him decide how that would look, and if I can handle more or not. ````````````````````````````````````````````````````````````````````````` He's the best boss. His expectations are the only ones I need to meet and He always gives me the strength to meet them. It feels so good and peaceful to know how much He loves me, no matter if my hair is combed or not. And because of that, what HE brings me to do in the day is peaceful and good too. ````````````````````````````````````````````````````````````````````````` Thanks to all my good friends for their continued understanding and support. You are amazing. And super more praise and thankfulness to God, for giving me His peace and strength, and loving me even in my failings.

Another Kind of Loss List, Part Two.

Yesterday was a tougher sort of day. The RANA delivery person came to pick up Joel's O2 equipment. His feeding pump was also picked up. When I awoke to this thought first thing in the morning, I cried. ``````````````````````````````````````````````````````````````` Which took me by surprise. Back sometime in the fall, I think, I wrote a blog that was a "Loss List" and wrote about how I was feeling about the very thing that happened yesterday, many months later. So I guess I shouldn't have been too taken aback. But in the last two weeks, thinking about the equipment pick up didn't really seem to faze me. ```````````````````````````````````````````````````````````````` Joel wasn't in the equipment. The equipment helped him live longer, but the equipment WASN'T HIM. I was grateful for it, and saddened by the need of it. I wouldn't term it a love/hate relationship, the emotions connected to this machines wasn't anything so strong or easy to define. And I thought whether they disturbed me by their presence in the absence of my son, or if the blank spot that their departure left was a sad reminder... well, it didn't seem like much of a difference. ``````````````````````````````````````````````````````````````````` So when I woke up with the heavy sadness and tears, it was oddly unexpected. When the RANA gentleman, the same one who has made deliveries for us for about 8 months, phoned to say he was a few minutes away, it was all I could do to keep my voice level on the phone. And to somehow compose myself for his arrival, which I somehow managed to do. It was hard for him too. His eyes were a bit red and teary as he shook my hand for the last time. `````````````````````````````````````````````````````````````````` And then the oxygen equipment was all gone. And after all the tears and pain, a strange feeling of liberation also washed over me. I was so sad there was no longer a reason for the equipment. And I was so... released? that there was no longer a reason for the equipment. There was a tiny flutter of joy in amidst the other feelings, a flutter of joy because Joel no longer needed any assistance in breathing. ```````````````````````````````````````````````````````````````````` I guess it's funny. I wrote about that day, FOUR MONTHS before it happened. And I wrote about how I was going to feel. And yet how I felt was astonishing to me. And when I go back to that blog post, I think I pretty well nailed it. Yeah. ````````````````````````````````````````````````````````````````````` By the way, for the record, the day Joel died I did throw out all his meds. I forgot to pour them down the sink first, or maybe I was just too exhausted. I just tossed them into the garbage. A tiny little baby step in the lost list. The easiest one for me. I didn't love the meds, though they made Joel's life better. I didn't mind the work of giving the meds. I just didn't like the need for them, or the side effects they might have. So yes, I really did throw them away the day he died. And of course, I did that with tears too.