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.