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!

Thursday, May 22, 2014

A few pictures for you...

Here are a few more pictures.  :)

Wednesday, October 23, 2013

Smith family update

Someone was asking about this blog, and I figured I really should put some sort of something up here, and so I am.

I last posted when Janaia was 5 weeks old, that was a LONG time ago.  Apparently some of you want to what has been happening since then.  And I appreciate that.  Thank you.  :)

The trouble with this blog is that I don't know where to go with it.  I don't know where to go with it...

Do I continue on writing happy family stuff?  Well, I sort of hope that something previous to this date might be of help or encouragement to anyone else who stumbles on this page in a similar situation to ours.  And if my last five posts are saying how happy we are and how wonderful Janaia and Caeden are, etc, etc, then I wonder if someone like that might sort of leave without reading the FULL story...

What I mean is that it can be incredibly painful if, for example, you have just found out your firstborn child has been diagnosed with a fatal hereditary disorder and then you look at someones blog that is all about how they just had a new, healthy baby.  I know.  I remember...

On the other hand, I don't know if I want to continue this blog by continuing to record my grief.  Because I still grieve.  I always will.  Because I will always miss Joel.  I will never forget about him.  But I find myself more and more disinclined to post about it...  I'm really not sure how to explain that.  It's almost like I don't feel it is ... appropriate? somehow?

For now I will say that everything here seems very, very good to me.  With some qualifiers.

1. Janaia has in a strange way put me through an intensive grief.  She is a consolation to me.  But you don't have a consolation unless you need to be consoled.  I continue to grieve my son.  And watching Janaia grow and develop reminds me constantly of my missing child.  I feel incredible joy as she learns to eat.  And with that, intense memories of Joel, trying to teach him to eat, needing a gt, etc.  I don't mind the grief.  It is good to grieve my son, because it is good to remember, and to love him.

2. At times it is hard for me not to worry about 'little' things.  It is silly, and I try not to give em the time of day, because I know it is ridiculous, and yet a part of me resist this.  A part of me can not go back to taking for granted that most kids are healthy and "normal."  So when Janaia is a bit slower than Caeden was at sitting up, silly thoughts enter.  I know she doesn't have PBD, but there are hosts and hosts of other things to go wrong.  So I have to remind myself frequently that healthy babies are still all different and develop at different rates.  (like the time the Dr. questioned if we should watch her weight.  She is tall & thin, just like Caeden was.)

And I'm not going to waste a minute complaining about the lack of sleep.  Because I have been the happiest tired person on the planet.

I have THREE wonderful children.  I get to enjoy two of those kids every single day.  And the third one I carry around with me in thought through memories and the love I still hold for him. 

Janaia is almost 7 months old.  She is a very, very happy little girl.  I'm sure some of you would like to see some pictures from the past 6 months.  :)

Friday, May 10, 2013

God is Gracious

I'm trying to write this in a spare moment.  No, not a spare moment.  No moments are spare around here.  A stolen moment more like.  If I'm writing this, it is because I stole a moment when I should be sleeping, or cleaning, or doing laundry.  But a girl's gotta do what a girl's gotta do.  I have been meaning to write this blog for a week now, and I don't want to wait a moment longer.

But I'm going to have to keep it much, much shorter than I wanted to.  I had a lot I wanted to say, but man, a baby can sure keep ya busy!! 

So, last Friday we finally got hard core answers on if Janaia also has a PBD.  Two of her blood tests came back NORMAL.  The third didn't come back yet, but it is really not an important test anyway.  The definitive test shows she is PBD FREE.  My precious girl will not suffer and die from a peroxisomal disorder.

I needed to give you all the good news.  Like I already said, I wanted to write a lot more.  But life with a five week old baby is proving a bit crazy, so this will have to suffice for now.  I think you all can read some between the lines anyhow, to see how I feel about this news.  It's pretty wonderful.

Thanks for your caring and your prayers.

More if and when life calms down a bit.  :)

Sunday, April 28, 2013

Welcoming Janaia: Part Two

I know the big question on all minds.  You are wondering if Janaia is PBD free or not, and why I haven't mentioned it.  The answer is simply that we still don't know for sure.

When she was born, I felt her skull.  Her fontanels were totally NORMAL.  A huge sigh of relief.  She was interested in nursing right away.  She seemed very "normal and healthy.  I went home felling optimistic.

But Janaia had a tongue-tie like her oldest brother, Caeden.  And soon nursing was not going well.  She kept me up all night, for the whole first week.  We had her tongue-tie released, but things were still not going well with nursing.  She went a week without any weight gain.

I was quickly heading for crazy-town.  Lack of sleep, worry and frustration over nursing and weight gain, and the whole thing just felt so much like a repeat of how it went with Joel...  and I was just flooded with memories and feelings about Joel.  Janaia's features started looking more and more like Joel's.  I didn't feel optimistic.  I felt worried and sad.

Those first two weeks were doozys.  Metabolics didn't even get us in for blood work until she was two weeks old.  Which meant we had two more weeks to wait for a confident answer.  To top it all off, my milk supply was dwindling, and we had to use some formula.  We had to rent a double breast pump and I was back to pumping and bottling milk, like I had to with Joel.  I had to suppliment with formula too, a real disappointment. 

But this is when things started to turn around.  Janaia started to gain some good weight.  By the middle of her third week, she was 8lbs, 14oz (birth weight was 8lbs, 4oz).  I got (slightly) more sleep because Steve could bottle her for the first watch of the night while I got three hours of sleep.

To sum it up:  We still don't have the blood work back.  It's still hard at times, I might be a bit paranoid as I watch for any signs of PBD.  As nothing big has appeared, and as she has gain more weight in a week than Joel did the whole first month, I feel more optimistic again. 

I am still not getting much sleep, but she is a very good natured baby and doesn't cry much.  I think the problem is a bit of GERD, or 'baby reflux.'  It seems like she is spitting up a lot, gagging, etc., during sleep and that wakes her up.  She's fine if I hold her, it's just laying her down that is the trouble.  Yes, in order to survive, I sleep sitting up, holding her securely propped in my arms.  It is totally against the "lay them down flat on their backs in only a sleeper" rule, but sometimes increasing one risk very slightly is better than increasing the huge risk that in an overtired state I accidentally set the house on fire, or end up with a complete breakdown.  It's not ideal, but it works better than the alternative. 

And I'm really hoping that if I get my milk supply up to snuff so we don't need formula, maybe the reflux/spitting up will get better and she'll sleep better lying down in her bassinet.  She now prefers the bottle, and it is a bummer that I STILL don't have enough milk and have to use some formula.  I'm not sure I'll ever get her back on the breast, but for now we are not worrying about that, because things have been way to emotional around here as it is...

  But so far, compared to both Caeden and Joel, she cries a lot less than either of them, and has lots more happy, bright, alert times that Joel did in the first three months.  So far, no sign of the colic that plagued my first three months with Caeden.  So far.  So far she is very easy to settle and loves to cuddle.  We are totally in love with her.  Neither Steve nor I can get enough of looking at her bright eyes and perky little face.  Every day I feel so blessed, and every day I try not to worry or be sad, thinking how awful it would be to get back the blood work if the news was PBD.  She'd still be worth it, every bit of it.  But it is a heck of a price, the pain that would come with the blessing of having her.

I know we have been covered in prayers.  Thank you one and all.  It is a test of faith, for sure.  Here are the words from another Bible verse song that I have been singing:  "Every good and perfect gift comes from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."  Thank you Father, for my good and perfect gift.  And that You do not change.

Now, some pictures!  :)

Friday, April 19, 2013

Welcoming Janaia, Part One

My daughter is two weeks old today, but of course, with a new baby in the house I have not been able to post here!

I should, in fact, be sleeping right now, and I am going to toddle off shortly, but I thought I'd at least take 20 mins and see how far I got in updating you.

Janaia Lee Smith was born on April 5th at 11:18pm.  She weighed 8 pounds and 4oz.  She was 21 inches and 3/4 long.  (you pronounce her name "Jan-A-ah" or "Ja-Nay-ah," either way, tomato, tomato.)  Her name means "God is gracious," for those who like to know.

For those of you remotely interested, here is a brief recap of her birth.  I sprung a small leak in my waters on the morning of the 5th and felt sure that by evening I'd be in labour.  Sure enough, at 7:40 regular contractions started every 5 minutes.  After only 4 of them I phoned the midwife and we drove to the birth centre.  (Since Joel was born in only 3 hours, I wasn't waiting any longer)

We arrived at the birth centre a little after 8.  After the prelims, I got into the huge bathtub full of very warm water.  There I managed the pain of the contractions fairly well for about two hours.  It was great, actually.  I mean, painful, but great.  :)

Then things started to get really intense.  I was only at 7 cm and was very disappointed because the contractions/pain had really intensified.  They offered me nitrous oxide and I took it!  This was at 11:10.  I had a contraction and my water broke.  Then I had two super massively painful, intense contractions and at the end of the second one, Janaia's head was crowning!  Between 11:10 and 11:18 I went from 7cm to full delivery of my beautiful little girl!

She floated out into the water and they handed her to me.  She cried briefly and quieted as I held her and cried myself.  I was so blessed, I had gotten the birth (excepting the pain, of course) that I had really wanted, in the birth centre, just Steve and I and the mid-wives and doula.  It was quiet and peaceful and so private.

The midwives checked us out for the next three hours, her blood sugar was great, she passed all her tests and I did OK too.  They released us, and we headed home for our new life together.

Now I better sign off and try to sleep.  I have had minimal sleep for the past two weeks, but that is for another day.  For now, here are some pictures.  :)

Tuesday, March 12, 2013

This week at the endocrinologist...

.... everything was FINE!  :)

OK, I'll give you the details, don't beg! 

This week went much, much better on my new 7 mini-meal a day plan.  I actually managed to gain back a pound or two.  I am now totally against fois gras, because I really empathize with those poor ducks, but it was worth it to me to stay off insulin and have such good blood sugar numbers.

Yes, Kara, I am so with you about the eating 7 times a day diet.  I can't WAIT to just eat when I feel hungry and go with anything nutritious I feel like, instead of looking longingly at an APPLE, for goodness sake, and thinking... hmmmm... how can I put protein into this mini meal.  I mean, have you tried eating an apple with a tin of sardines?  Yeah, yeah, I eat it with cheese, but then there is a limit to how much cheese you really should eat in one day, considering how much fat is in cheese. 

Thankfully, since I only am eating more fat until the Baby arrives, I am sort of just not worrying too much, within reason.  I think my arteries can handle it for 6 weeks.  And yes, One Tired Momma, cottage cheese is my friend!  It is low in fat and has a good amount of protein to go with the carbs.  The only thing that really drives me nuts about cottage cheese is that it is HIGH IN SALT!  I have yet to find a brand that is not high in salt...  ah well.  Again, it is only for 6 weeks.    Who knew eating such a "healthy" diabetic diet could be so unhealthy!  ;)

And thank you for the suggestion about steak, Kara, because yes I LOVE steak, but I don't usually eat it very often because: 1. expensive, 2. not as good for you as chicken.  But this week I am for sure having me some steak!  I'm not sure I'll manage a potato with it, but we will see.  I'm finding the best carbs for me are very high fiber.  Which is why I am eating between a cup to a cup and a half of All Bran each day.  Half a cup is 2 servings of carbs, but it is also almost HALF of your daily fiber.

I thought I ate quite a bit of fiber before, but now it's just crazy.  Maybe all that fiber is washing the fat and salt right out of my system!  Anyhooooo.... I actually have not missed prune juice on this new extremely high fiber diet.

Sorry, I think I got way carried away in all the details there, more than you wanted.

Ahem.   When I saw the endocrinologist today, she was happy with my weight gain.  She was happy with my blood sugar readings too.  She felt that eating 7 times a day in small doses of carbs was the key.  I agree, but also know that never sitting down until an hour after I eat is also a part of it.

And because she was happy with things today, I DON'T have to see her until TWO weeks, instead of one!  Yahoooooo!  Not that she isn't nice, but all these appointments are killing me!

When I asked her about having Baby at the birth centre she smiled and said "Well, NO insulin!"  She also said that it was up to my midwife and I, she was OK with letting us figure out the details, but she felt things were going well.

In fact, I asked her today if I would need an ultrasound to check on Baby's weight and she said she didn't have anything to do with that, it was up to my midwife to decide if it was needed.  I was relieved by that.  From what I know, ultrasounds are notoriously bad at accurate estimates of baby weight anyway.  I actually would rather trust my midwife to 'feel' Baby and guesstimate her weight.  (though that isn't totally accurate either, obviously!)

When it comes to Baby's weight, I feel like I can't win.  So I have decided I can't lose either.  Most people I know sort of expect that a diabetes baby will be big.  If my baby is over 8 pounds, they are going to say it was diabetes.  But all my momma's babies were over 8 pounds and she never had diabetes.  Big babies run in the gene pool, people.  In fact, if this baby is any less than Caeden (9 pounds, 11oz) then I'm going to feel that diabetes was not a factor in Baby's weight.

As nice as it may be to have a small baby, like Joel was (to me, OK, I realize that 7 pounds is actually not small, just average, but after 9 pounds and change it seemed tiny) a small baby will be a bit worrying to me.  Because if Baby is less than 8 pounds, I'll have this niggling doubt as to whether Baby is small because she shares the same gene defect as Joel had.  There you have it.  I both want, and don't want a small baby. 

But the only part of that I control for the moment is my blood sugar.  And thank the good Lord, right now that is fine.  So when Baby comes, I'm just going to go with whatever weight she comes in.

I am counting down the days.  I can't wait to see her, and I cry about 5 times a day with both joy of anticipation and dread at the possible realization that might come with it.

Thanks, fellow GD sufferers, for the encouragement and understanding.  It is so nice you understand!  It gets a bit lonely out here in GD land.

Saturday, March 9, 2013

If you can stand it, MORE about diabetes!

Here is my new plan for keeping my blood sugars normal and still not losing, or even gaining, some weight:

I eat 1-2 carbs EVERY TWO HOURS, along with a protein, and then I squeeze in some veggies here and there too.

I don't know which I am looking forward to more, being able to eat some of the foods I have been unable to eat right now (like cow's milk, cause right now I'm having almond milk),  or being able NOT to eat what and when I DON'T want to.  The jury is out on that one.  The jury is not out on almond milk though.  It definitely sounds a lot more tasty than it is.  At least, the kind I drink, which has 0% sugar in it.

Anyway, it has only been three & a half days since I saw the endocrinologist, and I have been able to gain back maybe a bit over a pound on this new, strict regime.  And my blood sugars are looking really good, as well.  So I am very happy about that.  If I gain back all three-four of the pounds I lost, I might start to relax the 2 hour eating schedule just a bit.  That would be nice.

Because my strict eating schedule means eating 7 times a day (I might go as long as 2 & 1/2 hours between a couple of the mini-meals).  And about this time in pregnancy, I feel FULL.  Really, really FULL.   And if you could just grab a couple crackers (or better yet, a donut) for a snack, then you might be hungry an hour or so later.  But if you HAVE to eat lots of fiber and some protein with that carb, then let me tell you, it stays with you a LOT longer. 

Yeah, and no donuts for incentive either.  Not even too much fruit.  Which is something I really crave, but if I eat a piece of fruit, then YOU GUESSED IT, I gotta eat some good amount of protein with it.  And I'm supposed to limit my fruit to 3 servings a day, but I might cheat a bit because my blood sugars are OK, and because if you are not extremely hungry and you crave fruit, well, it works.   But only 15 grapes (seriously) and NOT 20!  Because one day I made that mistake, though the diabetic chart said 15, I thought, "really??" and ate more like 20 and then it was bad... so I can never do that again.

This is likely all fairly boring for you all.  Minuscule details of my eating/managing my diabetes.  Just skim it, I'll never know!  It's just my life right now.  Steve comes home and asks me how my day was and what happened.  I just give him a look...  I ate, I cleaned, I took a brief rest, I ate, I cleaned, I briefly played a game with Caeden, I ate, I walked, I had a short break on the computer, I ate... you get the idea, repeat SEVEN times over.  It's a bit boring at times, I might add.  Writing this blog is the most fun I've had all day...  :)

Here is one thing I am grateful for.  These cd's I bought that are parts of the Bible made into songs.  Yes, really, I know that sounds like "super spiritual" or something.  It's not.  It's just really comforting and encouraging, because we (Caeden & I) listen to them lots in a day and then while I am cleaning the songs are in my head.  In fact, all night long, every time I wake up to go to the bathroom, there is one of the songs playing in my head.

And so while it would be very easy to be even more completely obsessed with diabetes, and what I eat, and the health of this baby, and what happens when Baby comes, it is a nice mental relief.  (because obsessed really seems the right word to describe this level of mental & emotional involvement)  Instead, my background mental noise is "We are more than conquerors through Him that loved us." and "Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praiseworthy, think about such things..."

I'm grateful for this grace of God.

The date of Joel's death approaches closer.  I worry that it will get 'missed' in all the other stuff going on.  I don't think that would be, ultimately, very good for me.  So I am hoping that I'll be able to prepare for that a bit before it happens.  Whew, this is sure an emotionally dense time for me.

Thanks, friends and family, for caring enough to keep up with all this.  I truly, truly appreciate it.  I know that at times it is not the most fascinating reading.  It's nice to have a place to put it down, though.  And a continual surprise to me that some of you still bother to read it!!  Either you are very, very bored people, or you are incredibly loyal.  I'll go with the loyalty!  :)