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!

Saturday, February 16, 2013

Blood Sugars and Baby Smith

OK, so maybe keep all my blood sugars in the normal range was a bit harder than I expected.  I really thought, since the diet seemed pretty easy for me to follow, and since 5 times a week I walk for 2 half hour periods a day, that my sugars would be fine.

And most of them were.

But my Waterloo is my after breakfast sugar.  I was warned, the dietitian did tell me that morning sugars are usually the killers.  She was right.  I could not believe how high they could go after I ate my totally OK breakfast of, for example, a slice of whole wheat toast and scrambled eggs.  Or my oatmeal, WITH NO SUGAR, just a tablespoon of peanut butter and a dash of cream with cinnamon.  Seriously, it was the cook it for 15 minutes kinda oatmeal as well.  Then I tried half a banana and two hard boiled eggs.

All of them failures at keeping my blood sugar down.  So, today I finally had success!!  What was the secret?  It appears that I am going to need to vacuum or scrub floors, or take things up and down the stairs for about 15 minutes right after breakfast.  I don't normally get that sort of thing going until later.  Normally, I eat my breakfast and then I take my decaf coffee or tea and sit for half an hour or so and do my email and etc.  I love my leisurely first morning pace.  OK, I might be spoiled that way, but it is so nice to work up slowly into the day.

Not any more, at least until Baby comes.  I can't see anyway around it, but to do at least 15 minutes of slightly sweating exercise each morning RIGHT after I eat.  But if that is what it takes, then that is what it takes.  At least I still have my prune juice.  It could be worse.

So, now for the fun part.  Today we got to go to Babymoon Ultrasound for a "just for fun" ultrasound of our little munchkin.  And now I can tell you that I am 100 per cent sure she is a girl.  We got a very clear shot of her "little girl bits."  I can't believe it, but I am really going to be using all those pink sleepers!  It blows me away!

And Baby Smith is already quite nice and chubby.  I'm sure my dietitian, my endocrinologist, and my midwife will all be very happy to hear that news!  Ha ha ha...  Anyway, she has really cute chubby cheeks.  Now I'll watch my blood sugar and hope to goodness she can still fit into that "newborn" size little sundress with the cutest little sweater for her "just been born" photos.  Here's hoping.

But though some of the medical persuasion might feel her chubbiness is suspect, I was still happy to see it.  It just feels nice, and if for some reason she is born early, I know that it is good that she is chubby.  Not that I want her to be 9 pounds 11oz like Caeden was.  Here is my hope: 8 pounds & 6oz.  That is exactly the size I'd like her to be.  :)  We'll see how that goes.

Another fantastic tidbit - Baby Smith has hair!!  I don't have a picture of that, but it showed up really nicely on the 2D part of the ultrasound, a nice little hank of hair just above her ears.  That makes all the indigestion worth it, if indeed it was caused by her hair.  Seriously, this pregnancy I have had the most uncomfortable gas pains in my poor little tummy, and I just kept saying "This child better have hair to make it worth it."  So yeah, she's got hair.

The thing is, the chubbiness and the hair make me think of her as being like Caeden.  And Caeden = healthy.  And it's hard now, not to think of Baby as being healthy.  I mean, in my heart I am starting to feel that she will be healthy.  I guess that is OK.  It's not going to make it any better, really, if I am expecting her to be healthy or not.  The truth will out, and then we will deal with reality.  So I am trying to just be OK with thinking she is healthy and trusting God will help me if I find out differently.

Want to know the funny thing?  After we got home, I lay down for a nap and had a real cry about it.  About feeling Baby was healthy.  Because it felt oddly disloyal to Joel.  And because as happy as I will be if Baby is healthy, it also felt sad because it felt like I was really leaving Joel behind.  I know I am not, it just felt like I was "Oh, Baby will be healthy and we will be in our healthy normal lives again, and leave the world of PBD behind us."  And that actually really hurt.  Because I love Joel so much, and it is kinda hard for me to separate Joel from the world of PBD. 

My thoughts and memories of him include g-tubes.  And cuddly a 2 year old who couldn't sit.  And his tiny little feet that never really grew.  They include a little boy who laughed and smiled but never spoke.  Part of it was therapy, and medications.  It just was. 

 And so yeah, feeling happy at the thought of a healthy baby feels a bit like being disloyal, like saying "I didn't want another of YOU."  And like I'm so glad to leave that part of my life behind.  But really, I'm not.  I mean, if I could choose, Joel would be here and Baby would be here and be healthy too.

I don't know, it is hard to explain.  I never wanted Joel to be sick or to suffer, and PBD meant just that.  On the other hand, if you love someone who has brown eyes, but blue have always been your favorite, do you keep thinking "Things would just be so much better if your eyes could only be blue!"  Would you tell your loved one they needed to get blue tinted contacts?

So I didn't want Joel to suffer. But in the things like the blindness, or the inability to eat or sit, the things that didn't bother him, he was happy and content enough, how could I not just accept those parts and even come to love them?  They were just part of him.  And I loved ALL of him, just the way he was.

Am I happy or annoyed about this diabetes thing?  On the one hand, it is a distraction from all this other emotional stuff I got here.  Keeps me busy with blood sugar, instead of PBD and such.  On the other hand, sometimes I just feel like "Hey, I've got enough going on here without dealing with this stuff too."  As you can see.

There are only about 6 more weeks until Baby comes (unless she actually arrives at 40 weeks, which would make it 8).  That is not too long.  It is hard to wait.

Which is why I am happy to present a preview of Baby Smith.  An ultrasound picture of her (though it won't show the hair).  Isn't she cute?  And she belongs with us....


  1. SO sweet! And a GIRL! How awesome is that! :-)

  2. She is so precious! I am so excited for all of you! All the best to you as you wait. My prayers go with you. We are also looking forward to a little one - we will be grandparents for the first time in early august. Can't wait!

  3. Oh my...she IS a super cutie. Chubby is good!!! And...mornings were the hardest for me too....no matter what I did....Wow, only 6-8 more weeks. Hope it flies by.

    And...I can see how you are conflicted when it comes to this baby's health and Joel. The way you described it makes sense to me. For your sake and baby girls' sake...I pray she is healthy. And I KNOW it won't mean that Joel will still not be your baby always. But I can see how it can be frightening when you really stop and think about it.