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..


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!

Wednesday, January 16, 2013

How we are in three words: Lights, Undies, Stamps.

Well, it has been awhile since I posted!  Almost a month!

Baby is now at 27 weeks.  I feel her move lots and lots.  She moves differently than I remember either Joel or Caeden moving.  Steve and I love to play with her when she is being active.  Specially me.  You pretty much see me going around all day long with one had on my belly on a spot where I can feel her.

Caeden and I were playing with her this morning, actually.  We had a flashlight and were trying to see if she'd respond when we shone the light into my belly.  She is somewhere around the age when the eyelids open and the eyes are sensitive to light.  Results were inconclusive.  But it was fun.

And while we were doing this, apparently both Caeden and I were thinking along similar lines.  Because I was thinking "If she has a PBD, I better enjoy this light play now, because I don't know how long it will be possible for her to see and respond to visual things.  (Joel seemed to have some amount of vision all his life long, but after about 8 weeks of age, his visual responses were greatly reduced)

While I was in the midst of this sad thought, Caeden suddenly asked me "What will we do if _______ is sick like Joel?"  (Because we call Baby by her name at home, but Steve really wants her name to be a surprise until she is born and so Caeden and I are trying our best not to give it away.  And I asked him, in a quavery voice, I admit, "What do YOU think we will do if ______ is sick like Joel?"

My faithful little boy answered "We will love her."  "Yes," I said, voice still quavery, "we will love her."  I don't know if he was checking in on me and how I am doing, or if he was reconfirming where we stood, or getting reassurance that things were still OK.  But he has not forgotten that his sister may not be healthy, which I had started to suspect might have happened.  I was glad, and sad, to know that he still understood the tenuous nature of our future with this baby.

I go see my obstetrician for the first time on Monday.  A bit nervous about that, but also looking forward to it, because it means I am in my third trimester, finally.  I'm already huge.  I know I promised pictures, and I really mean to give them to you, but I can't seem to get my husband, me, and the camera all on a good day together.

But to illustrate how huge I am, let me share a pregnancy grievance story.  Oh please, just let me.  It's one of a pregnant ladies enjoyments, so humour me, OK?

True story:  We went grocery shopping last week and my belly is now so huge that even my "Motherhood Maternity" brand jeans refuse to stay up properly.  Which means that as I shop, I am engaged every 3-5 minutes in a undignified and let's face it, humiliatingly uncool two hand under the shirt pants hitch maneuver.

OK, that is bad enough, but I am pretty sure every pregnant lady has this problem at some point.  Here is what added insult to injury.  As my pants are constantly slipping about 1/2 an inch, my underwear are slowly working in the direction of the force of gravity.  Only, when I hitch up my pants, those stubborn undies REFUSE to go up too.  So, as the shopping excursion progresses, my undies are slowly coming into position nicely all bunched up in my crotch.  Yes.  Really. 

And there is a washroom at Superstore, but now I am so furiously annoyed  (a nice way to describe my state of mind) that I am refusing to go and fix this, I stubbornly shop faster and faster just to get out of the store and done with the whole blasted thing.  The good thing thing is, all my shirts still come very far down over my mid-section, so the problem remained obvious only to me.  Ah, the humiliations of pregnancy.  I just thought I would over share them with you.

And last thing to share, I promise.  Today Caeden and I are trying an experiment.  I fear my son is succumbing to that common malady, materialism.  Which often comes out in his tendency to hoard.  And which worries me on so many levels, one of them being that I am more than a little suspicious that Steve and I are both contributing to his materialism by subtle things WE say and do... in other words, maybe we are more materialistic than we think.  OK, I am pretty sure about that one.

But I digress.  Today Caeden had a stamp.  He has asked me a few times now if he can start a stamp collection, a past time I am not against, but my son has also got this tendency to fad-ism.  By which I mean that he buys into any new thing that comes along.  So that he wants to collect "Trash Buddies" for awhile, and then Bakugan is the next thing, then Star Wars Angry Birds and now lately it is Skylander.  Just to name a few.

It seems so obvious in a child, that this tendency is unwise and immature, that it shows a fixation with novelty that does not use good judgement.  So obvious, eh?  But then, of course, look around.  We are waiting for the next version of X-Box, the next fancy TV, the latest in music technology, the new fancy phone/computer/god-machine.  Hey, I don't own a cell phone, but I did get a Keurig.  In essence, that is just a very fancy, glorified coffee maker.  It does the same thing that people have done for centuries with beans, boiling water, and a pot.

OK, that was a further digression.  But you see, my son is falling ill to a malady that is rampant in our country.  And maybe Steve and I infected him...

So, my son had this stamp and then he couldn't find it.  And then at lunch time I prayed a simple prayer "Thank you Jesus for this good food and this good day."  And then my son asked me "Why did you say it was a good day when I lost my stamp?"  And I sat there quiet for a few minutes, frankly a bit speechless.  I'm thinking a lot of things, like "Look buddy, if a lost stamp is going to ruin your day, you will NEVER have a happy day in your whole life" and "Hey, I think it is a good day and I lost a son and not a stamp, bucko."

It might be time for some changes in our house.  It sure is time for some discussion.  So we chatted about the stamp.  We discussed if stamps can really make you happy.  Apparently they can.  I questioned how long that happiness really lasts, and whether it really resides within the stamp.  We discussed what a stamp really has the power to do or not to do.  And I could see I wasn't really making much headway.

Thus I proposed a little experiment.  I found a couple more stamps and taped them to a card.  I gave them to Caeden to put away.  And I said, "OK, our experiment is to see what power a stamp really has.  Let's see if these stamps really can make you happy, if they really can keep you from being lonely, or feeling sad or being bored."  And for almost 10 full minutes my son stood and looked at those stamps.  Then he got bored and went off to play with something else.

I wish I could say that when I pointed that out to him, the light dawned.  No.  Not yet.  But I am waiting for the inevitable complaining or whining or crying that happens at least once a day, at which time I can smugly point to the stamps as an obvious cure.  :)

At least, at this age, the lesson is simple and somewhat immediate.  It's a lot harder to convince a 16 year old that happiness does not reside in the newest phone or a new car.  In fact, it is hard sometimes to convince ourselves.  And maybe, sadly, for a lot of us, happiness HAS come to reside in these things.  Thank God for my son.  Thank God for my son, because raising this child points out my own hypocrisy and foibles.

I hope that the next time my coffee maker breaks or we decide not to afford a new gaming system, or going out for dinner, that I remember that it is still a good day.  Because it is.

1 comment:

  1. So happy you posted, I was just thinking about you. Glad to hear all is well. Always praying for you and your family!