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!





Wednesday, January 23, 2013

Midwife

In a sudden turn of events, I am now under the care of a midwife!

I didn't expect it or even think it was possible at this late date.  But what a blessing from the good Lord God!  It's a bit of a story, so I'm going to leave out most of the details, but a friend of mine who got pregnant a little bit ago was talking to her midwife about me.  And how I didn't get a midwife. 

And her midwife told her to tell me she'd take me on!

So I found out on Thursday night that I was now officially under the care of a midwife.   On Friday morning, my OBGYN's office called me to reschedule my appointment on Monday, and I could just tell them that was not necessary!

My first appointment was today.  Sorry, because I am going to gush a bit, I know.  Again, really sorry in advance.  But it was just such a blessing!  I know that Dr. M. is a very good OBGYN, but I know that the appointment today would have been so very different with him.

Instead, I met my midwife, C. and she is really great.  She asked me to tell her the story of my previous two births, and so I could tell her the story of Joel.  I brought some pictures for her to look at.  We discussed a lot of stuff.  I was there just over an hour, and it was so good to be so relaxed and just talk it all over with her.    I think she is going to be a great fit for our family (and especially me).   It is really hard to explain the difference between this appointment and what a doctors appointment would have been like, if you have never had both to compare.

I had my cry and I didn't have to feel bad or awkward about it.  I know that by the time Baby comes, her and I will know each other quite well.  And she'll make sure I know the two other midwives she works with.  They too will know and understand our story.  This is a great comfort to me.  I will be able to relax during labour knowing that when Baby arrives, I don't have to worry about how a doctor is going to deal with things.

We got a tour of the birth centre and man, is it nice!  The hot tubs are HUGE because they do water births if you so wish.  I seriously think that if I sat in one of the tubs, you could fill the water right up to my neck.  Caeden was impressed too, because when we got home I asked him how he liked C and he said he wanted to have a really big hot tub.  Imagine his disappointment when I had to tell him that would be for me, not him.  The beds are double beds, so that Steve could come snuggle up with me and Baby after she arrives.

Steve was totally sold on the birth centre, but we still have not made any firm decisions either way.  We have some discussion ahead of us about it all.  C let Caeden have the Doppler and he got to put it on my tummy to hear the Baby's heartbeat.  He was quietly thrilled.  Baby had a nice strong heartbeat.  She seemed to be lying head down, but then, she still has lots of wiggle room in there.

And, oddly enough, my blood pressure was still OK.  I can't believe it, because the morning actually started of way short of ideal.  Of course, I keep expecting some sort of stress/anxiety to show up regarding the health of this Baby.  Then there are the other, more common, forms of stress about a Baby coming.  I've been sick for just about a week and I'm feeling awful.  I woke up at 4 am, got back to bed at 5am, and then got woken up again at 6am when a car horn/alarm went off.  I'm congested, and I have a cough that makes my sides hurt.  I have almost completely lost my voice too.  I finally fell back asleep at about 7 or 7:30, and then I was woken up at 8:30 to get ready for the appointment.  We were running 5 minutes late, and then when we got to where we thought the appointment was, there was a mistake and we had to go 15 minutes further.  If there was ever a morning for high blood pressure to show up, this was it!

I haven't been in the greatest of moods since getting sick, and I was really ready to cry several times this morning.  But once we got to the appointment, everything changed.  I love midwives.  We were 20 minutes late and you know, I really believed C when she said she didn't mind and I should never worry about running late. 

OK, thanks for letting me gush on and on about it.  I know it is kind of boring details when it isn't happening to you.  Like seeing tons of wallet pictures of the kids.  But I felt so blessed today, it was such a relief and I wanted to share something good, and say how grateful I am to God for taking care of my needs, and even some of my wants.   And I know a lot of people were praying for me about this, so thank you.

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.