Bad Dreams.

It might be time I did some intentional grieving... because this morning I woke up to a bad, bad dream.

Sorry to bore you with the details, but in my dream I had surrendered Joel to the care of Child and Family Services.  They had offered that if caring for Joel was "too much" for me, I could do this, no questions asked.  And so I had done so. (look, it was a dream.  In a dream we all do stuff that we never even would consider in real life)  Now it was a month later, a month since I had seen Joel.  "Oh my goodness!" I said.  "Maybe Joel has died and they didn't even tell me.  Maybe he is sick and I don't know.  Maybe I should see if they will let me visit him."

And then in my dream, grief and longing for my son burst full upon me (along with guilt and regret) and I woke myself up with my own tears.  And that deep, deep pain in my heart.  It was one of those crazy dreams that seems so real that even though I woke up and knew Joel had died, I still had to take a few more seconds to tell myself, "no, no, you never let him go, he DIDN'T die without you there."

It's hard to really explain the awfulness of a dream like this.  Some of you will understand.  Some of you also are good with imagination, you can empathize by thinking of yourself there.

I don't know.  Was it my feelings inside, letting me know that they need to come out, that if I don't deal with the grief, I will feel like I'm somehow in a sense "giving Joel away" because it is too hard to be sad...??  No, I don't hold that dreams have some special meaning, my Id speaking to my Ego, or anything spiritual or whatever.  But sometimes the FEELINGS that come out of them  can be telling.  Sometimes those feelings coming out in our sleep are a good barometer for us to pay attention to, maybe?

So, I am realizing from the deep feelings I woke up with, that I need to be careful to keep being "intentional" in grieving Joel especially in the holiday season.  It is easy to "get busy," to ignore sad things, to be distracted.  But I still miss my son so much.  I still long for him so greatly.  And I need to acknowledge that, because the love for him is always there.  And if I shove the pain aside because I am too busy to deal with it, then deep inside it feels like I'm "giving him up," in a sense, because it's too hard/inconvenient/painful to deal with the loss of him...  But all the love for him is still there inside me.

This might be hard for you who have not lost someone really close, particularly a child, to understand.  I know lots of people who think it is "healthy" to "let go" of the person, to allow yourself to be distracted and try to focus on other things.  Good for you, if you lose someone and find this works.  Personally I can not.  I just find that I have to feel the pain and sadness.  I can't deny the truth.  I miss my son.  I miss him so very much.  That's all I can say.

The Gospel as Explained to Caeden

First of all, I didn't take any pictures of our weekend away.  I didn't even think of it.  Sorry.  It was a good weekend though.  Caeden LOVED it, and I was glad that we were able to shower some love and attention on him.

Now, I have decided to write about something that happened last week and filled my heart up with joy.  It's not really connected in any way with Joel.  Still, I thought I'd write about it and share it.

It's going to be a bit of a stretch, maybe, for some of you unfamiliar with Christianity, or if you are an atheist, or etc.  I'd never make anyone read something against their will.  So I leave it up to you.  I'm not in your den right now, I'll never know if you read it or not.  It's up to you.  This post is about God.  And Jesus.  And one of the happiest things that I have ever been a part of, so I'm sharing it.  This blog is about sadness and grief most of the time.  Now this post is just plain about joy.

I have been praying for Caeden for awhile now.  Steve and I take him to Sunday School, we read to him from his children's Bible, we tell him about God.  I do this without any hesitation.  How could I hesitate?  I am convinced of the truth of the Bible, and I believe in telling my son the truth. 

Caeden has not been that interested though, to be honest.  He hasn't really wanted to memorize verses for Sunday School, and I don't make him.  He has verbalized that he wasn't interested in videos "from the Bible" and thought other kids videos were better.  He told me that he wasn't choosing God's side and he wasn't choosing the Devil's side.   (yes, he has also been taught about the reality of spiritual evil, but only AFTER he'd been taught about a good and loving God who was omnipotent.)

And I speak the truth to my child.  But I respect that he is an autonomous being that must make his own choices.  I have always tried NOT to force him about spiritual things.  God has never forced me, He offers us a choice.  So too must I parent my child, letting him make the final decisions about what spiritual choices he makes.  Though of course I make decisions as a parent on what cartoons are OK, etc, etc.

So, on with the story.  I have been praying for Caeden for awhile now.  And I talk with him about God and answer his questions, etc.

Last week he asked me a very, very good question.  He said (OK, this is not an exact quote, my memory is not that good, but it's a close paraphrase.  And same is true for all quotes following.) "If God made Satan, then how come God let him be bad and become His enemy?"  So I answered as best as I could.  I admitted that I had NO idea. 

I said "I don't know the answer to that, Caeden.  I don't know the answer because the Bible really isn't the story about God and Satan.  The Bible is the story of God and PEOPLE.  I don't know the answer for that about Satan, but I know a much more important answer that has to do with why God lets people choose if they will love and serve Him.  The Bible teaches that God wants us to love Him, and it can't be love if we don't choose.  God wants us to choose Him, that makes our love real."

From there I talked about how it says in the Bible that "All we like sheep have gone astray, we have turned each one to his own way." (Isaiah 53:6)  And we talked about what that meant.  I explained how in each of our hearts we wanted to go our own way.  We didn't want God to tell us how to act or the right way to go.  We said "I want to be number 1.  I want to make all the decisions.  I don't want to listen or obey God."  And just like silly sheep, our own way led us into trouble.  We got lost, we went the wrong way, we ran into wolves, we could not find our way back home to God.

Then I talked to Caeden about how Jesus said "I am the door of the sheep... If anyone enters by Me, he will be saved...I am the good shepherd.  The good shepherd gives His life for the sheep."  I explained what that meant, how Jesus came to earth to die in our place so that we could have new life and a new heart.  I even explained some things about sheep and sheepfolds.  I told him that those olden day sheepfolds had no door, only a frame.  I explained how the shepherd would bring the sheep in, and then sleep in the doorway, making HIMSELF the door, keeping the sheep safe and sound by protecting them with his own life.

Then I let it drop, as his attention seemed to flag.  Later that day while we were playing a game, he wanted to be "#1" and he wanted to be in charge and make the decisions.  I pointed out to him how his heart was just like everyone else's, that he also wanted to be "the boss" all the time.  How often he didn't want to listen to what I said, and how often when he "went astray" he got into trouble.  I could see him mulling this over.

The next morning I was reading the passage that I had shared verses from the day before.  It's John chapter 10, and it is a beautiful passage if anyone is interested in reading it.  (L.P. or C.P., if you are still reading this, take it as a recommendation  ;)  )  After quoting parts to Caeden, I really wanted to re-read it, and start to memorize it.  He found me reading and asked me to read it out loud, so I did.

Then he asked me "How did you enter the Door, Mommy?  And how do I enter the Door?"  So I asked him "Do you mean that you want Jesus to be your shepherd, and be the door for you to be saved?"  And he said "yes."

So I explained to him that I had prayed something like this:  God, I am sorry for my heart that doesn't want to listen to You, that wants to do wrong things and go astray.  I want to go in the Door.  Thank you that Jesus died for me so I can be forgiven.  I want Jesus to be my Savior."

He told me "That's too long for me, Mommy, I can't remember that all.  So I took him through step by step and he repeated a prayer after me.

And then I just bawled.  Tears of joy just streamed down my face.  It was the most beautiful moment, and I am so glad that I had the privilege of sharing Jesus Christ with my son.

I know that he has lots to learn.  I know that there are parts he did not fully understand.  But I know he got the main parts, that his heart had been rebellious towards God, and that through Jesus he could come safely back into the sheepfold. 

And I know that in heaven there was a big party and Joel and my father were part of it, rejoicing.  I said this wasn't really to do with Joel, but look, here he is showing up at the end of the story.  Just like one day he'll show up at the end of mine.  And at the end of Caeden's too.  But best of all will be meeting our Shepherd in person, the one who loves us so much that He gives His own life for us.

Weekend Plans & Pictures.

We are going away this weekend.  Well, not far away.

If you have been reading this blog from way back, you know that just before Joel died, he was granted a wish from the Children's Wish Foundation.  It is so sad for me, that he died before he could have any benefit from that, though I know in heaven he's got it way better.

Just a day or so after he died, the CWF lady called me to tell me they had a gift basket put together for Joel that she was planning to drop off (obviously there had not been time to notify them of his death).  When she heard that Joel had died, she felt so badly.  She asked if I still wanted his gift basket.  I said yes.  I figured the gifts were pretty specific for him and they might not have another child who would use/want them.  And I figured that I was going to be sad anyway, might as well see what was in the basket, as just always wonder.

The gift basket was actually a gift hamper.  It was filled with the most lovely towels and fluffy face clothes for use with the jacuzzi tub we had hoped for.  There was children's music and a CD player with a remote for changing songs while "tubbing."  There was baby wash and lotion.  And there was also a gift certificate for two nights in a jacuzzi room at a hotel, for us to enjoy while we waited for the real wish to be fulfilled.  It is hard to explain how I felt about that basket.  It was very, very sad.  But there was something nice about it too.  And now when I look at those fluffy towels, I think of Joel... and that makes me happy.

The certificates were to expire in December, and I had promised Steve we'd use them, so the time had clearly come.  Tonight we leave for two nights at a local hotel.  With a room with a jacuzzi tub. 

I can't begin to explain all the emotions with this.  So I'm just not going to.  I will say that Steve and I are leaving Caeden with a sitter tonight (or as we like to call it, a "sleep over" with his friend).  So we have the first night to ourselves.  If we need to, we can cry as we wish as much as we wish and we can think about Joel.  As I call it, "intentional grieving."  Good to do.  Specially for Steve,  because with his work so crazy and hectic, he gets little time for actual grieving.

And then tomorrow morning we will pick up Caeden and have a family day and night together.  Caeden does NOT enjoy hot tubs, but he does like pools, and so we will spend some time in the pool.  Maybe catch a matinee somewhere.  Just do fun family stuff.

Grief sure is funny business.  I find the pain level has remained the same throughout the last 3 or 4 months.  But I feel more energetic.  I am able to do more.  I need a bit less sleep.  I am still often wracked by grief, and I know this will be for the rest of my life.  On Monday, I got Caeden's nursery school pictures.  They were beautiful.  Really, I loved them.  But as I dropped him off and left, suddenly the grief seized me. 

Because with the joy of Caeden's pictures is the grief that I never got and never will get any pictures like that of Joel.  He could never have a smile like that for a picture.  The smiles I captured were the result of much, much patience, many "garbaged" digital shots... and were very rare.  I love those pictures.  I do.  But I never will get ones like the one of Caeden.  There will be no school photos at all.

And I realized once again that all through life there will be new things to grieve.  I'll not be able to expect all of them.  (the school photos were a surprise to me, I had no idea I'd feel that way.)  I realize more and more that it really is a good analogy, that losing someone that close to you is like an amputation.  You learn to live with the loss, to function, even, very much like before.  But that limb is gone.  You will never forget.

And I will always love my child.  Always.  I just pray, may God use this sorrow.  It is my offering to God, to use in whatever way He can.

Caeden and I.

I have not posted much here in the last few months.  It's not so much that I don't have something to say, as that I'm not that sure it is interesting enough for people to read it. 

It was inevitable, and therefore, not unexpected to me, that around the time of Joel's final illness and death, my blog had a huge surge of activity.  My "readership" grew enormously.  And then, in the months after Joel's death it slowly died down once again. 

And I expected that for many people, that would sort of be "the story" they were reading.  Joel's life, his impending death, death, and immediately after.  That makes sense to me, that others would feel most interested in that.  Of course, to keep "readership" up, posting more frequently helps, but even before I started to "slack off" in the past few months, readership was down.

I am OK with that.  It's one of the reasons that I have been less frequent about posting.  I just post when I feel like it, and when I think I have something interesting to say, when I have the time and the energy.   "When the stars align" as the saying goes.  And all those things do not happen simultaneously very often.  So it seems.

Still, I will keep posting a bit longer, while I still have something to say on here.  Eventually, I think, this blog will end.  I'm thinking about starting a new blog, though.  Because, like so many other vain people, I enjoy hearing myself think!  Ha ha ha!  That blog would be different.  It would just be about what I am thinking about, which might often be Joel, but also might be other things.  But that would be later on.

Today, I think I will write about Caeden.  I know people wonder about him.  Hmmm.  Even I wonder about him!

He is mostly happy.  He's a very up and down kind of kid.  0 to 60 in under a minute.  Quicksilver.  So one minute he is miserably complaining like a peach colour Oscar the Grouch that he DIDN'T want bacon in his scrambled eggs, he wanted BACON apart from his eggs (we only had some bacon bits, not strips, but it was REAL BACON, in my defense!) and then the next minute he is happily gobbling them down, humming all the while with a totally contented face.  Yes, I realize this is a characteristic of all children, but in my child it seems hugely magnified.  My writing can not possibly capture the real life drama of every moment in my house.

The thing about Caeden is that I have sure had my struggles with mothering my son in the last few months.  He is human, and less than perfect.  In fact, as many children are, he is often bossy, grouchy, greedy, explosive, and persistent in his nagging.  He doesn't have many requests, but boy, does he ever have a list of demands.

Just being honest.  At the risk of being criticised, because yes, I know, how grateful should I be for having such a happy, healthy child, when some people don't have even ONE?  I am grateful.  I love him to pieces.  And he has many, many good points.  But the truth is the truth.  Sometimes he is difficult.  Very difficult.  Sometimes I am not a very good, patient, understanding, etc., mother.

And there are other things that get into the mix.  Because even though you might think that having Joel would make me so grateful for Caeden, would make me aspire to do all I can to experience and cherish his preschool years, in fact,... well...in the past few months it has not.  In fact, in some ways Joel's death has just made it very hard to be a mother to Caeden.  I have, for example, struggled with resenting him...

Well, not exactly him.  But it would make me so irate when he would complain about things.  Because, of course, he has no idea how fortunate he is.  (and yes, this is always, silently, compared to Joel.  Compared to the other sick kids out there...)  His seeming ingratitude drove me nuts, I wanted him to be so grateful for his good health, his abilities, the comforts of his life.

And then there is the part of me that resented his intrusion on my grief process.  Yes.  Being honest.  At times when I was tired or sad, I resented his needs.  Or maybe even more, his wants.  He wants me to play, he wants me to do everything for him and with him.  And I want a few hours to curl into a ball and be silent, be sad, think, rest, in short, to grieve.  A huge conflict between my wants and needs and his.  But I am his mother, so how can I refuse him.  If I do, I feel guilty and then resentful.  If I don't, then it is straight to resentment.

It is hard for Caeden and I, because Joel is always there, between us, in a way.  And this past few months, I have been learning how to live with Joel, without him coming between me and my other son.  I am learning how to keep a son on each side of me.  It is a day by day, in the strength of the Lord, kind of thing.  If there is one thing that this has all really taught me, it is about my own weakness.  But that is another story.



And with this, I am also better able to love my son.  Oh, I don't mean emotionally.  Emotionally I always felt connected to him.  I mean practically.  I feel better able to love my son, practically.  And I know he needs it.  He dictated an email to me, for his Nana and Papa.  In his dictation he said "Please keep Papa from getting sick."  Telling words, for how he is also still thinking of illness and death.

 At times, I am even grieving for what I lost with Caeden in the times that Joel had so many needs.  Especially that first year with Joel.  It is a year that is lost to me, with regard to Caeden.  I didn't even have respite.  I have almost nothing of Caeden from that first year, and it makes me sad.

So I am happy to be able to come out of myself.  I am happy to be able to start to appreciate this last year at home with my son.  I know it is precious.  So precious.

It's partly that I might be coming out of a certain season in my grief.  Yes, surely, that is possible.  I think it is partly, too, a grace of God I am feeling, working in my heart.  My eyes being opened to my need of help to be a mother to my son.  And as I make my heart willing, confess my failure, weakness, and selfishness, I see a grace growing in me.  The ability to do the thing I wish to do, but find beyond my own strength.  Grace.  A gift. 

I don't usually put up pictures of myself, because I don't really like them.  If I never see a picture of myself, I find I imagine myself a lot better looking.  Soon as I see myself in actual picture form, the illusion is shattered.   It seems I am exactly "that manner of man" who looks into a mirror, then goes away an immediately forgets what I look like!   But I will put up a picture here, for you.  It's Caeden and I, proud of a jigsaw puzzle we did together.  Me and my beautiful, healthy, happy, passionate son.

Children.

Oh boy, my blog has been so neglected...  and right now I don't have much time, so I will be brief.

First of all, the good news: Star is at home!  She is doing really well, and for the time being, Jun thinks she's ok with out a CPAP.  She's making her own arrangements for an Oximeter.  I wanted to put up some happy pictures for you to enjoy.  These pictures are so beautiful...  Star, back with her loving family.

The sad news is that the more the Facebook GFPD group grows, the more kids that I get to know who die...  I had to say that in my usual un-euphemistic way.  This last weekend two children died.  One of them was Ilan, I put up a blog connection to his mom's blog a while back.  She hasn't been able to update her blog in a long time, and I don't know when or if she will now, but I wanted to let you know.  She is a special person in my eyes.

There are a couple of other kids from the group that are not doing so great right now either.  It is the same as it was with Joel.  He got sick or was hospitalized so many times.   We never knew which time was THE time, until it suddenly was, and he died.  So each time one of these other children is really sick, I feel the tension of it.  Two of these kids I have never even met, but I see Joel's face when I look at them.  Kyarah and Justin.  Pray for them, and the families.

And the other child who has been sick is Clayton.  You saw some pictures of me on my blog from the conference this summer.  Pictures of me holding him, and loving him up.  I bawled, holding him was so much like holding Joel and he was an absolute sweetheart, just like Joel.  Clayton turned and cuddled right in to me, with a big smile and happy babbling...

You might think this is hard on me... watching other sick kids like Joel, grow weaker or sick from time to time and then sometimes they die.  I can't say it doesn't hurt.  But I am happy to be a part of these lives.  And the truth of the matter is that often what really hurts me is the feeling that while Joel's death is so fresh to me, and while it still feels like I should be able to walk into a room and see him there, that the rest of the world forgets...   That in a sense his life is forgotten or even in a strange way, erased...  It is hard to explain this to someone who has not experienced it.  Joel is my child, and I can't leave him behind in my past like a totalled car, or a once favorite pair of shoes, or a childhood sweetheart.  He IS my child...

Like I said, it is hard to explain.  If you don't understand it, I'm glad, because that means you have never lost a child. 

To end off, I'll say I am so glad and privileged to know these other children.  I hope that if that terrible day comes sooner rather than later, that the fact that I knew their children, and will remember them, will mean something to the heartbroken parents.

Until then, I am so glad that Star came home.  May there be many more happy and healthy days for her and her family! 

Prequil Number One to "Thanksgiving."

Did I spell "prequil" right?  It isn't in my dictionary, and my spell check didn't pick it up...  So, I wrote a post on "Thanksgiving Part One" and now where is part two?  Well, I wrote that part a few days ago now, but just wasn't convinced I should put it up.  For a number of reasons.  It was really long, and took a lot of explanation to get to the main point.  It then didn't really do the main point a lot of justice.  I just really didn't like what I wrote...

I often don't really know if what I write has any merit or value, other than me expressing myself.  Which is exactly what happens when I write a post and then don't put it up on the blog.  While at times posting something on this blog is an exercise born of vanity, I think just as often it requires just a small amount of courage.  "My thoughts are my own," yes, that is a thought to be valued.  Once they are placed out in the blogosphere, they are no longer private property and invite all sorts of comments, replies and judgements. 

Not that you, my blog readers are not supportive or that anyone is openly critical.  But many times when I put up a post there is a cringe inside and a "quick, hit the button and stop thinking about it" moment before I post it up.  Because i am aware that my thoughts are not always really that amazing or great.  I can aspire, maybe to greatness, or maybe just a reasonable amount of cleverness, for a post or two.  But a continuous twice a week flow is quite, quite beyond me.

OK, now this blog seems to definitely have taken a turn to vanity, cleverly disguised as humility, and it is time to get to the brass tacks of it and quite goofing around.

Quite simply, I found my blog about "Thankfulness" apparently needed some background work.  And most of all, I found it was really inadequate to what I wanted to say, and requires a lot more time and effort. 

For it was just full of meaningless generalities.  So I am planning to write a blog that is specific and that will take some work, but mean so much more in the end. 

After all, every Thanksgiving don't those of us who pray say "thank you for shelter."  Very generic.  And thus, really, only a small amount of thankfulness (speaking for myself, you may disagree). 

But really, examining that statement fully, I would have to say a lot more to really get at the heart of it.  For I am thankful that Steve and I rent a house from my brother who gives us a rent that is many pegs down from reasonable to insanely generous.  And in this housing market, his rent has remained the same, which moves it from half of what he could be making to more like a third. 

And I am thankful that this house had a WASHER AND A DRYER.  I do not have to go to the laundromat... when in many parts of the world, a laundromat in and of itself is a crazy luxury.  I have a DISHWASHER, in fact.  What's more, I have so much water that I extravagantly waste it.  I run the tap until I get the hot or cold I desire.  The lukewarm water just goes down the drain.  I take a bath, and pull the drain.  No one reuses that water for another bath, or to wash clothes in.  And all this water comes straight to me, into the exact receptacle where I use it, sink, toilet, bath, washer...  That is just crazy...

In this shelter, I have the ability to adjust the temperature to the exact measurement I like.  It's not even a range, like 65-75.  I put 70 on the thermostat, and my home is maintained there!  Think about that!  No hotter or colder than I choose!  Not to mention all the blankets and pillows.  That my chairs are not just a place to rest, but that they are comfortable, and that I can even pick out the colour I prefer them to be.

My shelter is not just a shelter, made of corrugated tin, or canvas and sticks, or mud.  It is a HUGE place, with many rooms and all sorts of comforts and conveniences.  It is staggering and mind-boggling, the things I have.  I know people who won't even camp for fun.  How fortunate am I, are we, that what I do for "fun" in the summer is the way many, many people in the world live all the time...

This is what I mean about thankfulness... it is one thing to glibly say "Oh, I am thankful, God, for a home."  It is another to really, really think about what that means...

And I was going to write some things on my blog about Joel, and what I am thankful for.  But I found I was writing things like "I am thankful because Joel taught me so much about waiting patiently."  Very generic.  Says almost nothing, really, though.  So I wanted to really take the time to pick some things apart.  Oh yes, "unpack" statements like that.  I want it to be specific and real and absolutely from the depths of my soul.

And so, my post is delayed.  Coming soon.  Or maybe "Coming eventually" would be more honest....  :)

Until then, I have to write some update posts about Caeden, and such like.  I'll try and get to em.  I have been having some "avoidance issues" ever since Thanksgiving.  Not been online as much.  Struggling with balancing grief with the rest of life.  And as odd as that may sound, that is not a sign that my dealing with grief has gotten "worse."  It is because I am trying to do more.  Trying to be a better wife and mother, and take more care of my home, etc, etc.  Which means doing more, which means less time to rest or to grieve. 

And I am struggling with how to make that work, because grief is so up and down.  But it is really hard to say "Well, yesterday I cleaned the bathroom, did the laundry, baked cookies and made a good supper.  But today I only feel like lying on the couch with Kleenex and a good, distracting book, and only coming up for air to care for Caeden and make supper."  It is starting to look more and more like "laziness" on my part, and it feels hard to justify that to a husband who is working so hard at a difficult job. 

 At the same time, at times my grief still lays me low...  I find myself falling into the "time trap."  I myself am thinking "well, it has been over SIX months now, surely I can get up to all the regular household tasks, it isn't like it is that demanding with only one child!"  It is quite a task,  separating it all into reasonable and good expectations, particularly when if there is one thing other people appreciate, it's consistency!  And right now I feel just oh so inconsistent! 

I know there is nothing magical about "six months."  I know that when defining the grieving process, it is more accurate to say that it is learning how to live with and around the pain of loss, than to say it is a magic formula for lessening the pain.  I know that I'm better off pacing myself in this.  Mostly I just feel guilty that Steve's job is so very demanding, and I can just literally "rest" myself at home, and recover at will... 

So, pray for Steve.  I don't know how he manages to do his job so well, with so much stress, and with the burden of grief as well.  Ok, I DO know.  He trusts in God, and he asks for His help every day.  But it is hard to see my husband carry such a burden.

Thanksgiving Part One.

This last weekend was Thanksgiving up here in Canada, for those of you from the US, where Thanksgiving is in a different month, or those of you from countries where you are wondering "Huh?  Thanksgiving?  What?"  Yes, it was Thanksgiving, that holiday right after "harvest time" where we give thanks for all that we have.

Last year, both my Dad and Joel were here, together.  This year, we were two people short of a full family on the Kasper/Smith clan side of things.

This year as we approached the holiday, I went through the pain and difficulty of facing those missing places.  Though the day that my family celebrated was a peaceful, peaceful day...  I am sure there were people praying for me, because I felt the same sense of peace that I have sometimes had at other difficult times.  On that day, I felt just a great, great peace.  I have hosted many, many family meals and struggled with being bossy and grouchy in my kitchen.  I have felt flustered at times.  Hectic.  Rushed.  But this day I felt none of that... just peace, peace, peace.  I cooked a turkey and set the table and served desserts and ... sorry, there is no other word for peace. I'll add "at ease, unruffled, serene," but at peace really says it best.

So if you prayed, THANK YOU.  000000

If you didn't, that's OK.  Someone else was covering for you.  ;)

I wanted to write this post, writing the things I am so thankful for, because a friend of mine and I were talking about this holiday and she asked we had to be thankful for.  Indeed, I have written about my "peas" that I must count, and the sorrows and pains and disappointments I have.  They are still all there.  But most days, so is thankfulness.  And I 'd like to talk about that.

But I'm going to start off backwards, in a sense.  I'm going to start with a brief (I promise, BRIEF!) little summary of what I have been grieving lately.  I spent a good bit of time grieving Joel's age.  For several weeks, I had many cries over the fact that he was only two and a half.  That is just what really was hitting me.  I only got two and a half years.  He was only two and half when he died.  That hurt me so.  We didn't even get to three.  I can't believe I lost a child who would have only been a toddler...

Now, it just is the constant feeling that I have had ever since Joel died.  It says, in my heart "Something precious has gone out of this house."  I use the word "something" and not "someone" because it somehow gets more at the meat of what I am saying.  Sure, it is Joel HIMSELF that I long for.  But I say "I miss Joel" too, all day long.  This is a bit of a different feeling, in a way...  The first night he was not there, I felt it so strongly.  Something precious had gone from our house.  And day by day, I still feel it, at times more strongly, at times less.

Because Joel brought "something" into our house and into our lives.  I don't know what to term that "something" exactly.  But it was precious and beautiful.  So I will fumble along to convey to you what I mean, with a language that is limited, but is the best I can do.  I suppose we all can understand that the people in our lives bring something special to us.  Each person, their own special something, into our hearts.  As if each soul sang it's own special song.  And in our family, there were four little songs playing together.  Mostly harmonizing, playing and inter playing, like one of those genius compositions where each instrument has a special tune.  And the music was full, complete, and astounding.

And when Joel died, it was immediately as though that sweet little tune his soul was playing in our house stopped short.  There was something missing.  The music played on, but it was not the same.  If that sweet little song had never played, I would have never missed it.  I would have thought that the music of our house was only in three parts.  But I did hear that music.  I lived with that four singing music for over two years.  And now I feel the loss of "something" precious.  The music that I can no longer hear.  It still play up in heaven.  But my hearing here is not good enough to hear it from so far away.

And so I miss the something precious that has gone out of our house...

I just needed to say that, to acknowledge that part of it, before I could go on to tell you about my thankful list.  Which is coming up, in part two...

Update on me!

Wow, grief just suddenly hit me like a wall.  Again, should have guessed it might be coming, and maybe I did, but it still took me so much by surprise.  And just when I think that this blog might finally stop being about me, I'm back on here, detailing my sorrow!

In the back corners of my mind, I have been holding the knowledge that Thanksgiving is coming and that it is going to be the first REALLY hard holiday without Joel.  And my Dad.  My Dad so often gets added as a side note.  My grief for him usually just comes in little flashes, in between this and that.  When it comes to grief, I just want to insist "One at a time!"  Anyway, I was aware that Thanksgiving was coming.  Last year was the best and most special Thanksgiving I ever had.  This one will be so different for me...

So, I have been thinking about going back to last year and reading through Sept/Oct blogs, and dealing with the memories, etc.  Last fall was the horrible time where Joel was in hospital for three weeks, and a few times I thought he was going to die.  Right about this date last year, he finally came home, and we had the best Thanksgiving ever.

I hadn't done that though.  Go back over the blogs.  Avoiding it, I guess.  Ha!  Here I am, saying I am "intentional" about my grief, but I was avoiding this.  Just wanting to enjoy my beautiful fall, and to support my husband who is working hard in a stressful job.

Yesterday was a really good day.  Steve had a good day at work.  Caeden and I had a good day at home.  Caeden visited his cousins (whom he LOVES) in the evening while Steve and I went with church friends to see the movie "Courageous."  The movie was really good.  A child dies in it, however.  Pretty much putting the word "child" and the word "die" together in a sentence will bring me to tears.  So I sat in the theatre and tears were streaming down my face. 

Friends asked if it was hard for us to watch the movie because of that.  Not really.  Emotions and crying just happen for me, day to day.  And if there is something hard to watch, it is more watching my PBD friend's children, day to day decline.  And month by month, another child dies.  THAT is the hard thing to watch, real children, not fictional ones.  But the movie primed the pump, so to speak.

When I got home, I wrote a comment to a friend with a medical question, telling her a bit about Joel's last hospital stay a year ago.  Which also got me back on that time.

So when I got into bed, and Steve started snoring, I found myself ready for a great, big weep.  I fought back the tears.  I got out of bed for a few minutes and tried again.  Still fighting tears.  I should have just gotten up and gone with it, but since it was midnight, I really was stubborn about wanting to sleep, instead of to weep.

This morning I woke up from a dream.  At first, in my dream, it was three days before Joel died.  I was so excited to get up and start Joel's water and his feeding.  I was thinking, "Maybe if I get some extra water in him, he'll be better able to fight things off."  I could not wait to hold him in my arms again, just hold him and love him.  But then, in my dream, I looked at the time and it was 1pm.  ONE PM!  How had I slept in that long?!  How had I not heard Joel, making noises or crying?  Was he OK?  So I got up and searched.  I looked in his crib and in both his bassinets but he was no where to be found.  I was calling out, so distressed, for Steve to help me find Joel.  Then Steve came and told me that it was actually three days AFTER Joel had died...

So I woke to find the grief that I had so "valiantly" and uselessly pressed down was really just WAITING for me, like a huge sentient lump, to jump on my as soon as I moved.  Caeden was still sleeping this morning as I got up and went and had my grief.  I prefer coffee in the morning, but if grief is waiting, you might as well attend to it.  Now I have my nice coffee, as I sit here typing.  I guess today will be a crying sort of day.

And it hurts, it really does.  But again, I am OK with that.  I know that this is part of it all.  I know that sorrow is my companion now.  She is an excellent teacher.  It is only grief.  And so today I will likely have swollen eyes the day long.  I will drop Caeden off at nursery school, looking like less than a million dollars, that's OK.  I will have to try to drink lots and lots, so that I don't get a "crying headache."  I will have to be vigilant so that I don't end up leaving a pile of Kleenex somewhere, forgotten.

This week I cleaned off the top of my fridge.  Looks nice.  I sorted some papers and shredded old ones.  I baked cookies. I have found this last month that I have been "more productive" and energetic then the previous months.  I have more days where I feel like I have "done" something. 

Today is not going to be that sort of day.  Today is going to be a grieving day, and I'm going to go easy on myself.  I'm still going to need to have days like this.  I might need a day like this from time to time for my whole life, because things have forever changed for me.  That is painful, but not bad. 

So today I'm going to get out Caeden's Lego, and I'm going to sort it out into the different sets.  Seriously.  That is my plan for the day.  It is something that will interest Caeden if he needs my company.  And it is enough of a mental challenge to keep away too much boredom, or circular thinking, while also being very relaxing and non-demanding.  It is a good grieving day activity.

I know that some of you out there pray for me.  Thank you.  When you pray for me, I ask not that you pray that my pain would be taken away.  I can assure you, in any case, that this will not happen.  I ask that in this all, I can still find ways to love and serve others.  That I will grieve when I need to, and rest from it wisely.  That I will be able to learn the lessons of compassion and gentleness that God is using this sorrow to teach me.  And think of me and my family especially on this Thanksgiving weekend.  We still have much to be thankful for.  Pray that we can remember those things and celebrate them, even in our sorrow.

Internal Assessment.

Time to write a blog that I have not gotten to, but thought about for AGES...

Before Joel, I never really paid much attention to... well... I guess I would say the cultural attitudes regarding grief that surrounded me.  Of course... why would I?

But the last three years have really given me plenty o time to think about it.  And I have decided that, for the most part, we sort of suck at understanding grief.   OK, qualifier here.  When I write about "cultural attitudes" I am obviously making a blanket statement which CAN NOT possibly do justice to the variety of people, attitudes and ideas out there.  So no, I am not saying "everybody."  It's just a vague generality.

Still, my vague generality is that "people" are often very uncomfortable with grief...  I have almost felt at times that they see it as a sickness, like the flu.  And if it drags on longer than two weeks, you should see a doctor and get some medication for it, because it ain't right, good, or natural... it might KILL you, in fact.

Oh BOSH! 

Sorry, this has been pent up for too long...  I've just heard too many friends worrying about if they are "coping well" with grief and I'm completely baffled by it, because I think they are "coping" so well.  I have friends who have shared some of their pain, and then been asked if they are suicidal.  OK, once again, to qualify, yes, I know people can become chronically depressed, and yes, even suicidal.  But grieving is NOT the same as being suicidal...

And I get worried because I am sensing an extra pressure on these people who are grieving... the pressure of feeling bad about feeling sad.  Of worrying that other people are critical of their grief process  because they are worried  deep down these criticisers have a point...  People who are afraid to share their feelings because they might not be "healthy" or might be "worrying" to their close friends and family.  And I can't help feeling that THAT is unhealthy...

The following two paragraphs is something you should read at your own risk.  I am not writing this to make anyone feel badly.  The reason I am writing this is because I really want the grieving people who read this to feel supported, and everyone else to be able to help, and not hurt them.  This does not include making them feel bad, because if they feel badly, they will be less likely to reach out.  I just want to encourage the reaching out part, and discourage the part that might be quick to evaluate and criticise the grieving process.

I know too, that sometimes people worry about me.  They really wonder if I need more help, or maybe to take some medication.  And I try not to get too passionate about what I write here, because I'm afraid when I get carried away my language becomes extreme and I might hurt someones feelings.  So please understand that though I sound passionate, I am also attempting to be transparent, and maybe assure people that I am checking myself, and let them know why I feel that I am OK.

Still, I'm going to say this, and please don't be offended:  Really, you should not question or "worry" about how someone is coping with grief unless you are actually walking that road with them.  I mean, not just dropping in once a month.  I mean spending some real quality time listening or just hanging out like maybe more than once a week.  Seriously, if you are not in that category of closeness, then you really need to let it go and not wonder how they are managing.  And if you can not, if you really are that sincerely worried, then maybe you should take more than 10 minutes to offer advice like "see a doctor" or "think about medication" or "get out and exercise to help reduce your stress."  If the person is truly that important, and you really care that much, then get involved in their life (if they actually want you there) and spend some real time being a friend.  Or, at the very least, buy a book on grieving and read it, so that you have a basic understanding of what is healthy and normal, before jumping in with "conventional" wisdom.

Whew, rant over... I think...

On to bigger and better things.  I am now going to write out the ways I assess myself, the way I am making sure that my grief is not harming me.  Grief, in and of itself, is NOT harmful, unhealthy, or fatal.  It is how you deal with it that can become that way.

And I think it is so easy to confuse grief with depression, because they are so alike.  I am NOT against medication when people need it.  But it seems to me that grief and depression share some similarities, without being the same thing.  And maybe it is hard to separate them out.

Here is the way my grief is similar to depression.  It tires me out.  I need more sleep.  And I am OK with that.  First thing on my check list is sleep issues, and I think that I am OK, even though I am often tired out.  Can I get out of bed in the morning?  Yes.  Yes I can, and I am happy with that. 



Of course, if feeling tired all the time is interfering with your job, or if it is interfering with basic life functions, that is a different story.  I'm not saying people might not need help from a doctor in that case.

And crying.  A lot of crying.  Yes, this can be a sign of clinical depression.  Or it could be a sign that someone really close to you has died, and you might cry every day for a long time.  Which I do.  But tears are not harmful.  NO REALLY.  TEARS ARE NOT HARMFUL.  In fact, the month or two after Joel died was hard because I didn't really cry much.  I just walked around with a vacuum of aching nothingness.  I'd rather cry every day.  Oh yes.  I would.  And I feel much healthier about that.  I don't feel like I even started to deal with Joel's loss until the crying started.

So how do I know that I'm OK if I am tired a lot and I cry every day?  Well, I can still concentrate.  I can still sit and read a book and even learn some new info, though I admit my memory is not what it was.  Still, I have enough mental energy to listen and understand, to read and grasp things.  Good sign.

And I do not feel hopeless or helpless.  I actually feel pretty positive about the future.  I am able to look forward to things.  And I am able to enjoy things.  I enjoy reading, going for walks, going to a nice restaurant with my family, playing Sims, going out with friends.  I don't just do this activities.  I like doing them.

One thing that totally amazes me is that my weight has stayed the same through this whole thing.  A huge increase or decrease in weight can be sign of depression, or unhealthy stress levels.  (note the word can, because that is an important word)  Through this whole six months, my weight has basically stayed the same.  (not that I wouldn't have liked to lose about 10 pounds, I just decided that now was not the time).

I have not engaged in any reckless behavior.  I am not troubled by excessive negative thoughts.  And for the most part, I do not feel worthless.

Note, of course, that this also does not mean that if you have struggled with one or two of these things, that you are not coping well.  Negative thoughts might take over for a time.  For awhile it might be really hard to enjoy things...
The point of this list is more to see if there are any positives in how you are dealing with grief.  And the real question is, are any of these things harming you.  Reckless behavior is always harmful.  Feeling hopeless for too long might be harmful.  If you are thinking "I can't live this way much longer..." that might be a good sign you should get some help.

Oh, and by the way, I DO speak with a counselor.  That is the final check on my list.  Can I spend some time, most days, to talk with God?    I know if you do not believe in God, you might be stifling an urge to scoff.  OK.  But I have to say that most days I sit down with the best Counselor I have ever met.  He listens.  I am pretty sure that one reason I have not struggled with feeling hopeless or worthless, is because He gives me hope, and He gives me worth.  I'm not saying that to make you feel badly if you struggle with this.  Saying that is not meant as a reflection on anyone else's spiritual state.   

All I can say is that when I feel worthless, I remember that Christ gave His life for me.  I like to recall or reread Bible stories of Jesus, affirming the worth of the "woman at the well," the woman who had a blood disease, the woman caught in adultery  (yes, I love the stories about Jesus and women).  These things are my help.  Being in God's presences dissolves any feelings of hopelessness or worthlessness for me.

I put that last part in here because I don't want anyone to mistake how I am doing for personal strength.  It is not that.  I have people supporting me.  And I have found God to be the best of help in this journey.  I make it, because He is my strength.  And I am OK with that too.

Without Walls.

I meant to write this blog a week ago.  I started it.  Then life sort of happened, and I come back to it now, a week later...  So it's about time I finished it, I suppose. 

Before I get back into it, though, I just want to give a quick update on Star.  She is still in ICU, and still on the ventilator, though they have been able to dial it back and let her to a bit more of the work of breathing.  She is looking better and her heart rate is back to normal.  I do not know what the future holds, and we are sort of waiting to hear whether she will one day be well enough to get home and need a CPAP and oximeter...  Until then, thanks for caring and for praying. 

So, on to deal with the rest of this blog.  The title says it. Wall-less. A lack of walls. There are no longer walls around my heart. Or at least, what remains for "protection" would be more like a tent, then an actual building of some sort.

Usually we don't think of walls around our heart like a good thing. And in a lot of ways they are not, I suppose. Still, we all sort of have em... If they become a fortress, the walls are impenetrable by others, and very unhealthy. But walls can also be a sort of shelter.  And others can enter a home if
they are invited... maybe some walls are good, as long as we leave plenty of doors and windows.   And then we say we need to "guard" our hearts against certain things...   So there may be a sense that we should be careful about the sort of things we let into and out of our hearts...??  It is a complicated analogy, because hearts are complicated things.

During this three year journey, while Joel was alive, I have felt the walls of my heart disintegrate. I wrote a blog, back a long time ago, called "raw," explaining a part of that. I was going to say, now,  that I have felt like my domain was under a continual bombing run. But in keeping with my blog name, I will instead say that many, many earthquakes were shaking me.

And so, defenses were crumbling... there were gaps and holes appearing.  And since Joel has died, it feels like that last earthquake really finished off the remaining walls around my heart. I stand in the rubble gazing at a tilted door frame. There is the heap of what was the chimney. On the other side, a bit of wall still holds up an unnecessary window, as the breeze blows through where the rest of the wall used to be. 

This is not all bad... I mean, if you live without walls, there is lots of fresh air. You can look up at any time and see the sky. At night, the stars shine bright. And beautiful.  Sometimes walls are barriers.  I feel like there is a way that my heart has been opened up so completely to other people and their pain, and to God, moving my heart...  it is a bit hard to understand, maybe, if it has not happened to you, I think?

I have slowly gotten used to it. And so, I cry "at the drop of a hat" as the expression goes. Or over spilt milk. Or anything else. I'd give you a list of what things make me cry, but there is not always a rhyme or a reason to it, per Se.  But I cry.  And as the walls have come down, I bother less and less to keep the tears in or stop myself from just going with it.  It can sort of be a losing battle and a waste of precious energy.

Last Sunday, I had a little cry in the baby room during Sunday School.  This cry was because I was thinking about the offers I had made to friends to come to my home to pray, read the Bible, and to walk "the Way" of Jesus with me.  And I knew that I had so much time to give to service for God.  Yes, I was thinking about that and I was crying.  I was crying because I knew it was a huge gift that I was in a position that I could offer my home in that way, my hands that way, my time that way... and because it was a gift that I had in large part because Joel was not with me.  And I cried.  

I was not sad that people might take me up on my offer, because it gave me joy to make it.  I was deeply pained that I could do it because of the absence of my child, and I wanted my son so much.  I cried because it hit me how much I wished to be able to just sit and hold him and care for him.  I write this to you "my reader" knowing that in a real sense, this might be something very hard to understand, or maybe you just can't understand...  I will just say that once again, I had a release of tears.  A real cry, right there at 10:30 on Sunday morning in the baby room.

A friend came in upon me.  I don't apologize as often these days for tears.  And this was a friend who understood about them.  She said something about how she appreciated my heart, showing through my tears.  I told her not to be too impressed, because I couldn't really help it.  And she pointed out that while now the tears came as they came, it was still because I had chosen the way of tears, and not the way of bitterness and hardness. 



At the same time, having nothing for walls makes me feel vulnerable at times.  I find I am so strongly sensitive.  OK, I always have been a bit of a sensitive person.  But now sometimes I am just so defenceless.  That is how I feel.  I get hurt so easily.  It doesn't take much. 

I feel criticism will strip the flesh off of me.  Praise makes me very uncomfortable, but criticism really scares me.  I am afraid of it.  I confess that I have cried over the smallest slights or tiniest edge in a voice.  I don't know how to let anything roll like water off of a ducks back, because there are no feathers.  I am laid bare.  I am vulnerable.  I try not to let other people know how easily I bruise these days.  I don't want them to tiptoe or feel guilty just because they treated me like everyone else.

But what I crave is gentleness.  I crave people who are gentle.  I have always been attracted to people who were spirited, spunky, honest and direct.  And yes, I still like those people.  But I find a new appreciation for people who know how to be gentle.  What a gift that is.  Soothing hands on open wounds.

And oh, how good it is that Jesus could be such a gentle person.  No matter how people sometimes react to us, I can say that God has never been harsh with me.  His hands are so very gentle.  And when I feel afraid of being hurt, I remember this prophecy about Jesus.  "A bruised reed He will not break, And a smoking flax He will not quench..."  I remember my Savior is also so gentle.

I am a bruised reed.  I am a smoking flax.  Thank you Lord, You do not put out my little fire...

Wish I had better news...

Star has been moved from the "regular" room, back into ICU.  Her X-rays showed a serious infection is back in her lungs and her heart rate was very, very high.

I am feeling very, very sad about this.  Especially because it is very hard for Jun to get much time with Star, because the ICU has strict regulations on visitors.

I can tell Jun is very worried.  So if you pray, please pray for Star.  Pray that she can get well and go home.  Pray for Jun, and Star's father, and for grandma too, who often takes care of Star.

This is a pain I know all too well, and it is so hard when you are far away and can't even drop in with a casserole or a hug.  It feels helpless, not being able to do anything.  I know God has long arms, though.  So I am asking Him to give a hug to my friends, far away in China.

Quick update on Star

I would like to let you know that we have found a FREE CPAP and Oximeter for Star!  FAME Canada has offered to donate them.  FAME is a Christian organization that works with third world countries, supplying medical equipment and meeting medical needs.  They have CPAP and Oximeter machines in their warehouse.  Yaaaay!

Now I need to work out the shipping.  I hope that doesn't cost too much!

Jun sent me some pictures of Star, and said I could put a some up here.  I thought you might like to see the people I have been talking about.  What a beautiful family!

Hot tubs in a Better Place.

So, I will go with the business stuff first, before I get into the complicated emotional stuff.  A super generous friend from my PBD support group has offered to sell Jun her pulse oximeter for a small fraction of the original cost.  It is a beautiful offer, and I am grateful.  That means I'm still looking into a CPAP machine. 

Now I'm going to head for deep water here, folks...  Tricksy, as Gollum would say.

I don't really like feeling like I have to qualify everything I say, but I know that in a sense I do.   It is so easy to misunderstand words.  I know I do it all the time, so why shouldn't anyone else?

Here is my qualifier for the following blog:  When I write it, I'm talking about FEELINGS... I know the difference between feelings and facts.  Also, it is hard to believe, but true, that feelings are complicated.  It is quite possible to vacillate between two different feelings, or even to feel TWO different ways at one time.  Some of this is like trying to nail Jello to a wall.  Please don't think that some of the thoughts and feelings I write here reflect a constant state, or even an attitude about God, or heaven, or whatever the case may be.

I'm going to be writing about what is a difficult phrase for me to hear.  And oddly enough, it is NOT a difficult phrase for me to SAY MYSELF...  I hope this blog will partly explain why that is.  If it doesn't, don't worry about it.  You really don't have to understand everything I say.  Even if you are just aware of the complicated thoughts and feelings of someone grieving, and try to remember that a hug is often even more comforting than a phrase.  I don't always remember that myself.  So I don't really expect anyone else to.  Still, it is good to remind ourselves of that, no?

So yeah, as the title suggests, the difficult phrase for me is when people say Joel "is in a better place."  It often leaves me without a response.   How can I explain to you that something that makes me feel happy also sometimes makes me feel WORSE...??  It is something that I tell other people ALL THE TIME... how happy Joel is in heaven...  So why is it hard to have someone say it TO ME?

Well, there are two parts to it.  One is easy to see.  It has to do with the fact that heaven seems too far away right now.  That part of it has no connection to the fact that Joel is happy (which is good) and everything to do with the fact that I hear "heaven" and feel like I'm never going to get there.  Oh yes, I know, I am mortal, and I'll be old before I know it.  But you try to tell me that you could think that even one year was not a long time to go without seeing someone you love.  Imagine how incredibly far in time it might feel to think of 20 or 30 or even 40...  And sometimes when people tell me Joel is in a "better" place, all I really here is that he is in a "far" place.  Remember I said "sometimes," NOT "all the time"....  :)

Then there is the other part of it.  You could say that it is the entirely selfish part.  I'm OK with that.  I can admit to you that in even a parent's love, there is a selfish part.  And I sometimes feel ways that are selfish.  But I also would challenge you to examine if you might not struggle with the same feelings, if you were in my place.

Because there is even a part of Joel being in a "better" place that is hurtful to me, in a sense.  I'm NOT, absolutely NOT saying that if he has to be somewhere else, I'd want it to be anywhere else but with God.  I am so happy and grateful that Joel is free, healthy, happy and loved.  I told you, you can feel more than one thing at a time.

And the other side is that it hurts to have your child removed to a better place... Think about this.  Imagine that someone came to you and told you that there was a better home for your child... just go with me here.  Imagine they describe how another family could love your child, give them all the opportunities you couldn't.  This family could give them the best health care possible, the best education.  This family would never be unfair or lose their temper when they disciplined your child.  And then they would say "Doesn't that make you happy, that we are taking your child to a place that is much better than what you have offered these years?  Don't you agree that your child would be better off there, instead of with you?"

Imagine, really imagine what you would feel and think about that.  I think there might be a pain in hearing those words...?

I really wanted to get a hot tub for Joel before he died.  It was one of the very, very few things I could to "extra" for him to make his life more comfortable and enjoyable.  I'd never hand him car keys, or send him care packages in college, or, well, use your imagination and fill in the blanks.  The hot tub was pretty much it, and it felt pretty important.

It was very, very sad for me that he went to heaven before I could wrangle that.  Of course, I know that the heavenly version of a "hot tub" would be super duper much better.  Really, would I have wanted to put that off, just so he could enjoy this earthly hot tub?  Well.... honestly, even though it is selfish, yes, of course. 

 If you had a rich relative who was planning to give your child a pony for Christmas, and all you could give your child was a "Chutes and Ladders" game, wouldn't you think "Oh, I better make sure to give them the game before they get the pony, so that I get to see them enjoy it and be excited about it!"  You surely wouldn't say "Oh, forget the measly game that is all I can afford.  Just skip straight to the pony, I'm ok with that." 

And so even though I am so glad that Joel is no longer suffering, and even though I know heaven is a better place, I still mourn that I never got to "give" him a hot tub...  Would you feel any differently, if you were me?  I don't know.  I really don't.  Which is part of the reason that I don't even know what to say when someone tells me that Joel is in a better place.  Maybe they really would be so unselfish that it never hurts them?

But in my heart, when someone says that Joel is in a better place, it is hard not to feel like they are saying that the place he had here was not that great.  That the life he had here, with us, was not good. 

And I do know that some people DO feel/think that way.  I'm actually fairly perceptive, and while I can tell some people don't think that way, other people practically reek of this attitude.  If I sense any of that behind their words, it is particularly hurtful.  Because I know that I can never compete with God or heaven, really, I'm not trying to.  But Joel's life here was also mostly happy (as is the case of any one of us.  All of us feel pain or suffer at times, in between the good times).  And there was a lot of love here.  Hugs and cuddles and spending time with him.  The life he had here was a good one, and it was the best I could offer.

And remember that when I say that something is difficult to hear, I'm not saying that it is untrue or invalid.  I'm not saying it is wrong.  I'm just saying that my emotional reaction is not always what you might expect.  And that as true as those words are in my heart and mind, still, they often do not lessen the pain I feel because Joel is not here.  So remember, the most comforting thing you can do is sit and let me cry.  And give a hug.  Hugs are good.

A friend in China

OK, all my friends in the blogosphere, I am going to share my heart about something and ask for your help.

I have met a new friend, though the online face book PBD group.  She lives in China.  She has a little girl, named Star.  Star has been in the hospital for awhile now, due to a serious lung infection.  The doctors think she is about well enough to move from the ICU to a regular room.  This is good news of course.

The problem will be when it is time for Star to go home.  The doctors have told Star's mom, Jun, that it would really help Star to have a CPAP and an Oximeter.  (Does this sound familiar?  Oh, and can I tell you that Star is a sweet little two year old)  Star's family will have to buy the CPAP and Oximeter themselves, there is no funding for this in China.

I have been looking into this for Jun, trying to help her out.  From my initial research, I think the CPAP machine is going to cost between $500 - $800.  I know that when Steve and I thought we were going to have to buy Joel an oximeter and we were told it would be around $900 to $1,000.  Plus each probe was about $200 and was supposed to last two weeks.  I have been checking online, and I have found Oximeters (ordered from the States) that were $500 to $800.  I don't know if these one would be the same medical grade/quality as the one Joel had...

So I am going to ask the palliative care nurse that I stay in touch with her advice about Oximeters, which ones would be reliable and work for Star.  Because we want Star to be very safe!

I have also posted an ad with an online group that trades/exchanges/donates equipment for children with special needs.  I am hoping that might turn up something for Star.  But I am not sure that a CPAP and Oximeter really are the sort of equipment that come up very often. 

So I am working on brands, makes & models, and pricing, etc.  The other half of it is that paying anywhere from $1,000 to $2,000 is a big chunk of money, and a big worry for parents of a terminally ill child...

Of course, you all know how close to home this is for me.  You know that I know, I really know, exactly how it feels to be told you will have to manage getting equipment yourself.  And how it feels to have a child who is slowly getting weaker and weaker... And how hard is it, when you are already carrying such an emotional and mental weight, to have any extra stress added to it... I really can't even go on describing this, it is too close to home for me.

What I will say is that I really want to be able to help Jun, and Star, is some way.  Maybe I can help them find good, inexpensive equipment.  And maybe I can help them by raising some $$$...  I'm really not a good fundraiser sort of gal.  I'm trying to figure out the details of what this could look like. 

What I would really, really like to do, is raise the $$$ for the equipment, purchase it, and send it to them.  So that Jun could just open the package and there it would be, without her having to worry about finding it, paying for it, etc.  Of course, she'd still have to get and pay for probes, but this would be a huge, huge help.  I'm not sure how much $$$ I could raise, I'm not sure if there would be any trouble in shipping medical equipment into China (but I don't think so) and I would have to make sure that whatever monitor it was, was one that Jun could get replacement probes for.

I would also have to figure out how to raise money.  Well, honestly, I am sort of hoping that if I put the need up here, on my blog, maybe there would be people willing to voluntarily donate money...because even if there were 20 people to donate $50 each, that would be a very good start.  Anyhow, I have to figure out how I could do this, in a way that would be honest and above board. 

I think what I might do is find the equipment, price it out, and post the total cost... Then I could open it up for people to pledge money, and when the cost was covered, I could say "enough" and not have to worry about getting more money than needed and then what to do with it. (if that would be a problem!  ;)  )

For now, while I am researching all of this, I will simply ask you, my readers, who feel touched by this and would like to help, to reply with comments.  Any ideas?  Anyone know of reliable equipment?  Anyone who would be willing to pitch in some funds to help out?

Thanks, everyone.

And here is a verse about giving, that I love. It is found in Luke, chapter 6, verse 38.  The words of Jesus.

"Give and it will be given to you; good measure, pressed down, shaken together, and running over will be put into your arms.  For with the same measure that you use, it will be measured back to you."  ( the NKJ version and I put "arms" in, instead of "bosom")

I find that a good measure was given to me first, and now I really would like to put it back into someone else's arms.

And here is a boo-boo, and there is a boo-boo...

Sorry, don't know what got into me with that title.  Sometimes I have a dark sense of humour.  OK, a lot of times I have a dark sense of humour.  Even to myself.  But it helps me get by.  Even if I can't actually laugh, at least a smile is good.

So here I go, naming some peas, or counting my boo-boos, or whatever it is.

There is a "boo-boo" where I wonder if I could have changed something in the last two weeks of Joel's life to keep him here with me longer.  I think it has mostly healed over.  I thought about it most in the first months.  I had to really examine it, I had to feel really honest about the answer, I knew, or I'd never be free of it.  So I worked through it really painstakingly a few times.  Going over the last two weeks of his life.  Trying to see what I could have changed.

After doing that the first time, it never comes back as hard.  Sometimes it comes back to me, because (if you can BELIEVE this) I have forgotten a detail of that time.  Like I actually forgot, for a little while, that I had brought Joel in to emerg to be checked out the week before his O2 levels dropped like a stone.  All of a sudden I found myself thinking, "Hey he was on almost continuous O2 for the last weeks, and I never checked that change out!"  Then I went over it again, and it came back to me, oh yes, I did bring him in... and they did x-rays.

I'm so glad for this blog, for that reason.  Anytime I get muddled, and think I forgot or didn't do something I could have to help him, I can go back over what I did/thought/felt and it helps me.  So far I find I need to do that less and less.  But if the need comes back strongly at any time, it is here, recorded for me. 

And of course, there is the part where I say "If I had done something different, might he be with me NOW??" and the truth is, the farther I go from his death, the less likely that question could be a yes... Even if he had staved off that last infection, chances are that right now I'd be right about to lose him, or would still have lost him by now.

Then, for awhile, the "boo-boo" that hurt the most was Joel's bones.  All the buckle fractures and the spinal compressions.  They haunted me.  The picture of the two times when I know I was holding him when it happened, just come to my mind.  And it hurts me.  I really never grieved those times when they happened.  I couldn't.  I had to make Joel happy and comfortable, and I couldn't afford to have the horror of the moments at the front of my brain.  So now they come out.

Along with wondering if I could have changed that part of things.  There are infusions that help with bone density.  None of Joel's doctors ever thought of it or mentioned them to me.  I don't know if Joel would have been a good candidate for the treatments or not, but by the time I had really heard about it, it was too late for Joel.  I know it wasn't my fault, but it is a regret that I live with.  His weak bones caused him so much pain...

Then there is the last hospital stay, back last fall.  I had to deal with the pain and regret that I wasn't there for Joel 24/7.  I don't feel as strongly about the other times in the hospital when I went home for the night.  But I do about those three weeks.  Partly because that is when Joel got the pressure sore on his head, which would have been prevented if I had stayed there overnight.  I regretted greatly losing those three weeks of evening times with him, evenings were usually my best time with him.  And so I grieve each of those lost times, even though I don't know if I'd have stayed sane if I had stayed 24/7 for those crazy three weeks.

There is the pain I have to work through about whether or not I should have stopped doing P/T directed on skills acquisition, on whether I could have done more that first year, or whether I could have tried harder to keep going...because I know that P/T is really beneficial to PBD kids, and might even slow the regression process.  And so then I have to count all those peas.  All the times it literally became impossible to do P/T with Joel.  Like when he stopped eating and just slept all day.  And when he got his GT surgery and then had a couple of weeks after of feeding/puking trouble.  And then when he had his spinal compression/severe irritability and again ended up basically sleeping away a couple of months.    I could go on and on with all those peas, each one is a jagged thorn ripping into my heart.

And there are a whole bunch of other ones, smaller and larger.  Like wishing I had insisted on getting his adrenals checked in the spring when the breathing trouble started.  Or that I had been able to sing to him more.  Or realized that he liked HOT water sooner, so he could have enjoyed baths more.  Feeding him orally more than I did. 



And what I have been mostly doing in the last five months is clipping off those thorns.  It is painful work.  I can't really describe how much those thorns hurt me.  But I am working on them.  As I face them, examine them, tear them apart piece by piece, slowly accept what I could not change, and forgive anything I did in ignorance or over tiredness, they hurt less.

I am guessing they will return to haunt me from time to time.  I am guessing that around the start of March I will once again need to go over Joel's last month.  I am guessing that in January I will be grieving that we never got Joel his hot tub, as I will have been thinking of our hot tub "Staycation."  I am expecting to rework it all, but it seems like each time there are less thorns that have grown back.

It is no wonder, really, that only now has missing him started in earnest.  I haven't really been able to feel the thorns of missing him in the roses of my memories, because of all the other thorns.  Some days it seems there are so many thorns and so few roses!!

You can imagine the emotional energy expended in all of this.  No wonder I am so tired, so often.  And why sometimes I am so vague.  I wrote a friend an email to explain/apologize why I couldn't seem to remember when she sent me an e-card.  Then when she came up to me to tell me that I didn't need to explain, I had totally forgotten that I had written her an email about it. 

In fact, many, many times I have gone online to write someone and promptly forgotten.  I can't seem to grasp things mentally if I am not firmly and directly in their context.  By which I mean that if you ask me about an email when I am sitting at the computer, I will know what you are talking about.  But if you ask me anywhere else, I will not have a clue!  This is why it might seem like it takes me ages to respond to you. 

Details slip through my mind like water.  It feels like my brain is broken.  Maybe it is more like a "virus" has taken over.  I won't say it is a hostile program.  But it has commandeered my mind for its' own purposes.  I can't hold on to details like appointments, or your age or birthday, or when your baby is due, or things I have already told you TWICE, because my mind is so busy holding on to how many times I tried to do O/T with my son, or when I first realized his pain was from his weak bones, etc., etc., etc.  This virus that has taken over my brain's programming will have to run its' course.  It can't be removed without damage to my hard drive.

My apologies to you all for having to live with things like that for awhile.  I know most of you understand.  Feel free to help me out by supplying details I might have forgotten, if you think of it.  It seems this blog is now about TWO topics, something I usually avoid.  Oh well.  It is now about the things that have been taking my emotional and mental energy and about what that loss of emotional and mental energy does to my brain...  The first part was more for me, and the second part was more for you.  So maybe I should have written about them in reverse order!

Anyway, I have spelled out some of the peas I have been counting.  I think it does help me... it sort of feels like some kind of progress, even though I know that I'll very likely have to count some version of them again in the future.  Like I quoted, grief is a circular staircase.  You might be covering the same area, but at least you are going up.  Eventually.