living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Archive for December, 2009

Katie’s Christmas Legacy

Seems a few people I know are experiencing grief in a big way this season, it’s the first holiday after the death of their loved one.  I wish there was some way for me to bear it for them, because it really is so hard.  The world is happy, full of mirth, joy, and thanksgiving.  People are down right jolly.  When the one you love isn’t here, the contrasting darkness of your life feels so bleak, and almost shameful.  People still ask “Are you having a good Christmas?”  “Has Santa been good to you?”  “Did you get what you want this year?”  And the answer to all these questions is no.  Yes, even in sadness and in the mist of grief there are moments of light and joy, but they are breaks in the darkness, not lasting light.  A good Christmas would be with all those we love, that they would be alive, and celebrating with us.  That first Christmas after death  can be downright awkward.  Stuff your feelings, pretend to be happy, so you don’t bring others down.  Perhaps what those of us who can feel the joy in the season should be doing is lifting others up, not in a “Come onnn, cheer up!!” sort of way, but in an understanding ” I know this must be hard for you, but I love you” sort of way

This is our fifth Christmas without Katie, and still it’s hard.  Yesterday she was on my mind in a big way.  It’s not the same debilitating I can’t get off the couch, or why don’t we have more Kleenex sort of day anymore.  Having other kids now helps tremendously, they make you find joy.  But there was an emptiness in our house yesterday that doesn’t usually permeate the forefront of my thought.  I think knowing that the Christmas service in Edmonton for parents who have lost a baby was yesterday, didn’t help.  I had hoped that in being close I would make it there this year.  It really is a nice way to remember, how much is lost to some parents each year.  Kyle has been witting his exam, counseling students, and attending meetings about some ridiculous work bureaucracy, plus we had just made a trip to Edmonton last week, and therefore we just couldn’t swing it.

Witnessing, or knowing about new grief among my friends this season is hard.  It gets better, but constantly being told that that future is what we should hold on to, sucks, because the right now is miserable.  I think you have a right to be miserable if you need to, a big hole has been ripped open in your life, and pretending it’s not there does nothing to help repair it.  I wish I could find the quote, but I once read a quote that said essentially this.  God could mend your heart quickly with large lose stitches, but it would just tear open again, so instead He works slowly with small tight stitches, it hurts more and takes longer, but when He is finished it is lasting work.  You’ll always bear a scar, but your heart will hold love, hope and joy again.

So my friends, Lauren and Rob, Janine, and Jenn, and those of you who have lost someone you love this year, go ahead and have a hard Christmas, be lonely for the ones you love, cherish the breaks of light and feel joy where you can, but be true to how you feel, so that your stitches may be lasting too.  This scared heart is praying for you, and perhaps part of Katie’s legacy is understanding that sometimes you just need to grieve.


Sowing the seeds of greatfulness

Our best sleeper has become our worst, this morning I sat at the Kitchen table with Natalia watching the snow covered  landscape out my kitchen window turn from violet to twilight blue to winter white.  Drinking my coffee with my littlest one, who doesn’t seem quite so little anymore, got me to thinking about how I could stop time so that I could enjoy moments like these more.  Sure, when crawling out of bed way too early this morning I did not do it with gratefulness, but rather resentment .  Time seems to be moving to quickly, and I get caught up in the bickering, the whining, the wiping of bums, and it’s easy to let a whole day slip by with out seeing the importance of the small moments.

My kids are cute, they say cute things, they do cute things, and they have genuine love in their hearts,  I want to hold on to that before the bitternesses of world harden them.  I often think, oh I should take pictures of this or video tape that.  But I am lost in vanity, I often think her face is too messy, the kitchen is a disaster, he has no pants on, I can’t take pictures of this!  So I’ll have to leave it to memory, and honestly so much gets lost that way,  So maybe, I’ll pull out the video camera to caputre just how Natalia says “I yub you”, messy hair, dirty face, yesterdays shirt, no pants, in the Kitchen where last night dishes still await their turn in the dishwasher, and just enjoy the fact that I have captured her littleness before she seems so big.

For the ones we have here, I am so grateful to watch them grow, I should delight in them more,  record this time more, and care less about appearances, and care more about the fact that they are loved, happy, healthy and here today.

Today, I am grateful, even if I came down to the kitchen to find three Christmas oranges coated in bacon Grease, and had to steam clean the rest of the bacon grease from the couch.  Yes, I am grateful even with clenched teeth

note: this post was written over two days which is why “this morning” I was up with Tal, and walked into the bacon grease surprise.

Project lifesaver

I assume you’ve heard, or read about James, the 7 year old the Nova Scotia boy who followed his dog into a wooded area, and was missing for two days during blizzard conditions, was found miraculously alive,was medi-vaced, and died in hospital of extreme hypothermia.  If you have not the link is below.

James Delory, 7, remembered as ‘nice little boy’.

When reading the story on the Winnipeg Free Press website I read the following comment written by Bensmyson:

Posted by: bensmyson

December 8, 2009 at 10:24 AM

The harsh reality of autism is that it causes death. In the US, one in 91 children have been diagnosed with autism. Twenty years ago it was one in 10,000. As the father of a child diagnosed with autism my heart breaks with the loss of little James. There are no stats on the numbers of children with autism that fall to a similar fate, but all too often we hear of children wandering off in the blink of an eye.

Remember this the next time someone tells you that autism isn’t a deadly disorder and correct them. It kills and seriously injures many more than you can possibly imagine.

And it got me to thinking about what all the implications of an Autism Diagnosis are.  And, today while driving Petra to swimming I listened to a CBC piece on Project Lifesaver prompted of course by James’ sad news.   Project lifesaver is a program where your wanderer wears a bracelet or ankle band and through RFID they can track your lost loved one.  It cost about 7000 dollars Canadian to buy the tracking equipment and about two days to train volunteers or employees.  Ontario has a program, Saskatchewan does not, of course.

So where am I going here?  Well, right here to our family of course, if you read this blog you know me, you know Elijah has autism, and you can guess this story affects us on a more personal level.  Our headline could easily read:

Elijah Anderson, 4, remembered as ‘nice little boy’.

Our son is a wanderer, we lost him once in Chicago, and it was really easy to imagine that he had been hit by a car.  Elijah can talk, but if your a stranger, he won’t answer questions, and put him in a stressful situation and he couldn’t tell you if he was lost, cold, what his name is, who his parents are, or how old he is, let alone, his address or telephone number.

When we moved here to the country we we very afraid of him wandering off into the open space of the fields and becoming lost for days.  We looked into some personal tracking devices and found that unfortunately the technology available for personal use is somewhat dismal.  Luckily we don’t have the traffic issue here, perhaps the biggest danger he faced in Chicago, but we do face him being lost in a very isolated area.  Also, this last summer we’ve been lucky enough that he sticks to our paths and yard,  not wandering towards the roads often.  Though we don’t face a huge traffic issue the main traffic around here is gravel trucks going by at speeds exceeding the speed limit, and Elijah vs. a gravel truck, is going to be a losing scenario. It’s a fear that sticks with me often, when he doesn’t respond when I call him, I’m immediately worried.   I don’t have the luxury that other parents do in thinking  he has to be around here somewhere, he couldn’t have gone far, or he knows not to go in the pump house. I have to think what’s the most perilous direction he could have gone off in and start there.

It would be nice if Saskatchewan had a Project Lifesaver program, but I can’t even begin to hold my breath on that one, I really think it could save Elijah’s life.  But, what perhaps I find most upsetting is that most Canadians didn’t even begin to think that their community is missing this life saving service until they heard James’ story.  A little boy had to die.  I don’t find it alarming, it’s the way things go, things get fixed things after learning from our mistakes.

I’ve been thinking about James’ family, how heart broken they are, and my heart and soul go out to them.  Selfishly though. I do think of how their story could have so easily have been mine, and still could be.  I hope we’re spared, we do all we can to be, but it’s still all so easily gone.

Anyway, not a piece to make you feel sorry for me,  just something I’ve been reflecting on today, as I’m sure many Auti. parents are.

Sometimes Trees Fall

…and ornaments that hold sentimental value are left shattered on the floor broken into too many pieces to be repaired. Our tree just fell. We spent the day decorating it as a family affair, and now it looks just terrible. This tree hasn’t been with out it’s problems from the beginning. As a special bit of advice: if you think maybe you should guy wire the tree then you should. Looking at the broken glass on the floor got me to thinking about life’s tragedies, the things that we really have little, or no control over. I was thinking about why those ornaments meant so much to me, what joy those ornaments represented, and about what tragedies I’ve suffered, and in the end, even though those pieces are irreplaceable, broken ornaments are not one of life’s tragedies, even if I did cry over them.