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!

Tuesday, September 18, 2012


There is both joy and trepidation as I type that title.  Joy, because if all is well, that is the size of the little one inside of me.  Trepidation, because I have not yet heard the heartbeat  and have all sorts of worries and fears that I shall find something horrible out at my first doctor's appointment a week from now.

So, we are 10 weeks along.  I am doing OK.  I feel really crappy.  All. Day.  Long.  I don't know how  my husband can stand my whining and whinging consistently and all the time.  This time I have a lot more nausea, along with the killer indigestion pains.  And let me say, ****warning, grossness alert**** that I have very much impressed my son with my ability to pass gas on either end.  Oh yes.  His eyes have this gleam of admiration every time.  Thank goodness I spend my days with a five year old, and not in a board room....  Many a time I have reminded myself of my grandpa.  He took Dioval and had very loud belches...

Anyhow, I feel nasty, and the only position I feel comfortable in is lying down.  And once I am down, I don't want to get up, because there is something about going from prone to standing that really brings on the nausea.  Just like brushing my teeth.  But this time I am being really clever.  I have purchased children's toothpaste, the kind you can swallow.  I don't swallow it, by the way.  But it works because it doesn't do that dreadful foaming thing that regular toothpaste does.  Foamy toothpaste really kicks in my ralphing reflex. 

Thanks to listening to me complain.  I don't suffer in silence.  I prefer to suffer in technicolour, with lots of cheering going on.  Yup.  But seriously, I know, I know.  How fortunate am I to be pregnant?  I so am.  I so am.  Don't think I don't know that.

On the other hand, I have had a hard time getting excited or looking forward to anything, because, well, so many things seem possible to have go wrong.  Not only have I been wondering and maybe almost expecting to lose the pregnancy like last time, but then there are the other crazy thoughts. 

For example:  I am feeling REALLY HUGE.  I am ready to bust out the pregnancy clothes, my regular pants are so not comfortable.  My uterus is not yet out of my pelvis, but I look 5 months pregnant.  One of the reasons I decided to come out of the pregnancy closet was that trying not to look pregnant this last week just got to be too much suffering.  I am ready for sweat pants and big shirts.  In fact, even my "comfy" elastic pants feel uncomfortable as they press on my pain-riddled intestines.  So now you know!

And so, what thoughts do I have about this?  Well, I wonder to myself if what has happened to me is that a huge tumor is growing in my abdomen.  Yup.  You heard me right.  Maybe what I think is a pregnancy is really some weird cancer that causes strange hormone reactions in my body and is filling up my abdominal cavity.   Maybe that is the real reason I feel so absolutely ill.  Because it is hard to believe, you gotta admit, that something fabulous like a baby could make you feel so much like your digestive system has a serious viral attack that just won't go away.

So I am glad I am finally headed to the doctor next week.  I am hoping there will be a heartbeat (though there might not be at 11 weeks).  I am hoping when she pokes around and investigates things I don't hear a sharply indrawn breathe with the muttered words "Good Heavens!"  I am expecting her to tell me my blood pressure is too high, because I might really be that nervous. 

It's not like I have been stressing all the way til now.  I so couldn't even believe it was real.  I couldn't stress that there was a problem with the baby because I wasn't excited about the baby because I couldn't believe there was a baby and that I was not merely suffering 5 weeks of indigestion for nothing.  I'm only stressing now because I am almost at 10 weeks and have not lost the pregnancy yet, which makes it begin to sink in...  and oddly and conversely, makes it seem that much more dangerous and precarious for bad news.

Someone said to me that if I was meant to have another baby I would.  I sure can't disagree with that.  But of course, the trouble is if you want to be meant to have a baby and then everything goes ka-blooey!  And if you really want NOT to be meant to have some strange internal cancer... ya know?  I know that God is taking care of us.  Everyday I watch Caeden walk to school, I am overwhelmed by a fierce joy in the wonderful gift God has given me in my oldest child.  Even as I still feel so blessed to have had Joel, even with all the pain.  I am abundantly blessed.  I am very grateful.  And very human.  So I can't wait until that doctor's appointment is over with.  :)  (not that it is any guarantee either, but hey, I got take it a week at a time!)


  1. Congratulations I am so happy for the 3 of you, can't wait to read the updates of your pregnancy :))

  2. So happy to hear this news. I will say many prayers all continues to go well and baby is in there and thriving. Hugs to you! I know what it feels like to be pregnant after miscarriage....sooooo very scary. Add in your other fears and it can be overwhelming. Keep your trust in GOD. He know what He is doing.