Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Thursday, October 27, 2011

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! 

Wednesday, October 19, 2011

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.

Thursday, October 13, 2011

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...

Friday, October 7, 2011

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.