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, September 26, 2012

Lime

Well, I am sitting here and drinking a very nice ginger ale float.  Just thought I'd share that little tidbit with you.  :)

Baby is about 11 weeks old.  Making baby about the size of a large lime.  It totally blows me away how baby could sit easily in the palm of my hand, and I'd barely notice any weight, but baby has all major organs developed, and I'd see tiny, tiny little feet and hands, eyes, ears, nose and mouth if baby were in my hand.  But I still wouldn't be able to tell, boy or girl.

Today I went to my first doctor appointment.  To sum it up, it was sort of like going to a banquet put on by Queen Esther.  Which means I went in and peed in a cup, gave blood, and had to make another appointment for next Wednesday to have the "internal exam."  In fact, my doc didn't even bother checking my blood pressure!

My doctor was, apparently, very busy today.  My appointment was for 9:15, but she didn't want into the room until about 10:20.  I had read all three magazines.  So, back again next week for the real down and dirty part of the exam.  Yaaaay... something to look forward to...

But here is the good news.  She DID take out that magical little Doppler machine and she DID find the baby's heartbeat!!!  (I gotta get me one of those!  Wonder how much they really cost, because I'd use my every single day if I had one!)  There really is a baby!  It is true, and all this suffering was actually for a good cause after all.

A heartbeat = good news!  But still not an all clear for our health as I am missing some components of the exam.  And of course, a heart beat does NOT = a healthy baby.  Just a living baby with a 95% chance of being born sometime around April 15th, according to my doctor.  At this point, I'll take it.  Any good news is good news, after all.

Now that I feel OK about looking at maternity clothes and letting people know I am pregnant and thinking about baby stuff... I wonder how it will be.  Last pregnancy let me tell you what happened those first weeks.  Those first weeks I didn't really feel worried or freaked out about if the baby might have a PBD.  Instead, those first weeks I just re-lived my pregnancy with Joel.  And I mourned Joel.  And I missed Joel.  I thought a lot about his birth, and how I had thought he was a healthy little boy. 

I suspect that the next weeks will bring more of that.  I still grieve Joel, and another baby seems to really bring those feelings out.

Do you know what I have been worried about?  Not whether baby is sick or healthy, but rather whether I will be glad if baby has a PBD, because deep inside I am trying to "replace" Joel.  Like I miss him so much and want him back so much, and I hope a baby with PBD will fill that void.  That is the dark place that I have examined ever since we decided to have another child the good ole fashioned way.

The truth is, when I think of baby, I think of baby's birth.  I think of cuddling baby and I think of dressing baby in tiny outfits and getting up all night to feed baby.  And that is as far as I can go at this time.  Because right now, that is what I want and can have. 

I'm pretty sure if baby is healthy, I will be overjoyed anyhow.  The truth is, I just have a hard time imagining baby at any stage over about three months at this time.  My big question is:  Will I need a breast pump or not?

I cried in the doc's office when we finally heard the heart beat (because it can take a little bit to find that sucker!).  I was so relieved to hear it.  So for today, I will say "Welcome Baby Lime!  Make yourself at home in there, and any time you are are ready to take over the hormone manufacture on your own, is good with me.  Then Mommy can feed you some really good food for a change.  Instead of ginger ale floats and popcorn."

Tuesday, September 18, 2012

Plum

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!)