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!





Tuesday, December 18, 2012

Baby Girl

Here I am at 23 weeks.  Baby's movements can now be felt when a hand is placed on my huge belly.  In fact, last night Steve and I enjoyed just lying in bed and feeling Baby bounce around.  I imagined what I felt, little feet, tiny fists, knees or a backside.

It has also been a bit difficult in last weeks as well.  Tis the season, the season where we might really miss the faces we can no longer see.  Which means I have really been missing Joel and my Dad as well.  I don't know if the tiredness that sometimes overwhelms me is because of the pregnancy or because of the emotions and the grief.  But I take it easy, I am fortunate that I can, and I often take a nap during the day.

It's also been something new, the realization that this Baby is a girl.  Maybe this seems strange, or worse, very unseemly, but it has opened up a new set of grief possibilities.  I mean that in a sense, there has been a new sadness in thinking that our girl-baby might have a PBD.

NOT because it's worse when a girl is ill or dies.  Children are children.  Losing a child is just... hard to explain if you have not been there.  I wept many times this week, thinking of the people who lost a 6 or 7 year old, knowing they had been absolutely blindsided by their sudden appearance in the land of child loss.  Here in the world of grief so suddenly, with no warning at all.  At least I know ahead of time...

But I am off topic.  Here is the thing about a girl.  A girl just is different from a boy.  They are.  And girl children are a different relationship and a different set of losses.  A whole new set of "what ifs" to think about.  That might be hard to understand, but there it is.  If this Baby had been male, then I had already grieved once "the boy stuff."  In fact, I am so blessed to have experienced a son once already in Caeden.

It is strange, I acknowledge, that expecting another boy did not make me grieve not having a daughter, but having a daughter who might not live past her fifth birthday makes me grieve very specifically the loss of having a daughter.  But it is so.  There is something about losing what was possible and became impossible.

So when we realized Baby was girl, then we started thinking about father-daughter dates, and tea parties, and dolls, fluffy dresses, and when we'd allow make-up (if ever!).  You know.  Those sort of things.  Because a daughter is just a different relationship from a son.  And losing a daughter would be a bit different from losing a son.  No less or more painful to be sure.  But full of sudden grief realizations we hadn't had before.

A bit of something to work through.  Don't think I'm not super excited about a daughter on the way, though.  I am.  I have picked up a few girl clothes items.  We have our name picked, and when we are alone, we call Baby by her name.  We can't wait to hold her.

A strange fact: I have started to dream lots about Baby being born, and in every dream so far, she has been a boy!  Does this mean I can't really believe she is a girl?  I don't know, but that part makes me laugh, another dream of a boy baby as if I am in some sort of gender denial!  And in some of my dreams, Baby is a healthy boy.  And in some of my dreams Baby has a PBD.  Maybe that pretty much sums it up.

Now I better go.  My son is hungry.  He needs food!  He is growing like a weed, an inch since September.

Thanks all who pray for me during this time.  I appreciate it very much.

Tuesday, December 11, 2012

This post is just to point out I put a couple of 'new' pictures on the sidebar.  Lately Steve has been asking me why there are no picture of him up there.  So, I figured I better put a few up.  I never meant to exclude Daddy.  :)

I wish I had more pictures of Steve and Joel, but pickings are slim.  Not because Steve was not holding Joel or playing with him, because Steve did that every single day.  Just because Daddy was the camera guy and the camera guy never gets pictures of himself.  And if Daddy had Joel, Mommy beat a hasty exit to make the supper, or clean the kitchen, or maybe just take a nap.  I feel sad now that it never occurred to me to take more pictures of Steve with Joel.  I sure wish I had.

I tend to leave Steve out of this blog, because I sort of feel like he needs his privacy and I don't want to drag him and his feelings out onto my blog when he might not want them there.  So maybe he is a bit of a "gap" in the story at times.

But let me say this for the record.  He is one heck of a Daddy.  He loved Joel, he held him and talked to him and played with him and worried over him and loved him.  Not a week goes by that he doesn't tell me how much he misses holding Joel's little feet in his hand (he always used to rub them, because Joel liked it) or how Joel's hair smelled (because Joel smelled awesome all the time).

And because of Steve, I was able to stay home with our son and care for him myself.  I was also able to stay home with Caeden after Joel died, and spend time recovering myself and my son.  Steve is a great dad, and a great husband.  We love him very much.  I thank God for my husband.  And the rest of it is private, personal, and confidential.  :)