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!





Monday, February 25, 2013

Low Points

Saturday was a new low for me.  Everything seemed to really hit me at once, though of course, it really had all been building up over the last few weeks, or more.

I feel better now, but without getting into too many details here (because some are just P&C), there seems to be a lot to deal with right now.

One of the things I will talk about is the diabetes.  I find that part of this pregnancy to be very, very frustrating.  Because this whole blood glucose thing has gotten very precise and finicky for me.  So many variables, so many little things that throw it off.  And then I'm worrying that I'm going to have to many high readings, and the doctor will tell me I have to go on medication.

For example, I think I figured out that there is a problem with Sunday and what it is.  Because yesterday at lunch I was really, really hungry.  I ate 2-4 inch whole wheat blueberry pancakes, and a cup of cut up fruit on top (NO BUTTER OR SUGAR/SYRUP) and then I had, um... well, I was really hungry so I ate 4 of those little breakfast sausages.  I didn't even have a glass of milk with it.  Which means I should have been eating between 3-4 carbs, which should be OK.

And then after I ate, I went outside and had a nice brisk walk outside for 20 minutes.  I figured I would be fine, but NOOOOOO!  My blood sugar was high. 

So, naturally, I went to the couch and cried on Steve's chest for half an hour, and then I went back and retested.  Guess what I discovered?  Yup, you guessed it.  Lying down and crying does not improve your blood sugar.  So now it was EVEN HIGHER.  So yeah, THAT NO WORK as a solution you might say.

Now I am thinking that it might be that Sundays have been a big problem the past two weeks because I go so long between breakfast and lunch.  Normally I eat at about 8:30 and then again at 11am-ish and then again at between 1-1:30.  On Sunday I skip the 11am meal due to church and I wonder if that is messing me up.  I hope it is, because then I can fix it without needing meds. 

A very good and sweet friend gave me a gift on Sunday.  I'm not entirely sure, but I think there was a subliminal motivational message in the gift.  So I have set it in the bassinet in the living room, and I can easily go look at it before or after my blood test, in case I need too.  I'm going to put up a picture for you.



So, pretty cute, eh?  Though I do miss being able to join in for cookies, or whatever, what I miss most is being able to just eat fruit, as much and as often as I want to.  Because in this pregnancy, I have REALLY craved fruit, but now I am only supposed to have 3 servings a day.  Yes, really, I would eat more than that if I could.  Did you hear me say I CRAVE it???

One of the things that is really hard about this diabetes thing is that it FEELS so much like we've already entered into the world of doctors and monitoring and pokes and medicine.  I know that logically, the diabetes and the PBD are two totally separate and distinct things.  But it feels like I have been swept up into that "world" a full 8 weeks before I ever imagined it could happen.

The diabetes is a small thing, but weekly doctor appointments, finger pokes, constant daily monitoring concern, all that stuff, has really brought to my mind some of the more difficult memories of Joel.  It all reminds me of some of the more painful things.

So on Saturday morning, I woke up from this really vivid, very realistic dream that I gave birth to our daughter and looked at her and saw the marks of PBD on her lovely little face/skull.  And I spent the rest of the day facing that moment, and those feelings.  I don't think that was a bad thing, necessarily, but it was a hard thing.  And I'm pretty sure it was all the diabetes stuff that really brought it on/out.

I'm hoping that was THE low point for this pregnancy, and that the rest of it is a bit better.

And Kara, if you are reading this, I'm going to post up a note to you in the comments.  It's nice to have another person to discuss gestational diabetes with, that is for sure!  So, keep an eye out for it.  :)

Oh, and last of all, I have this song I have been listening to, and thinking about.  It is the words of Romans 5:1-5 put to music and it is really nice.  I am using the song to memorize the verses.  I still have a ways to go.  The part of the song that really hits me is the part that says "... we rejoice in hope of the glory of God, and more than that, we rejoice in our sufferings.  Knowing that suffering produces endurance, and endurance produces character, and character produces hope and hope does not put us to shame because the love of God has been poured into our hearts by the Holy Spirit..."

It is a good, good thing for me to remember and hold onto these days. 

Tuesday, February 19, 2013

Follow up.

I had my follow up appointment with the endocrinologist today.  How did that go?

OK, I guess, if you like follow up appointments.  I realized something today.  I realized that I don't really like doctors or appointments too much.  No matter how nice the doctor is, or if the appointment is very short.  Yeah.  I just don't really like them.  So maybe I am a bit hard to please that way.  I don't know.  My view of the whole medical system is of course, skewed by my experiences with Joel...

Anyhow, I realized I don't like doctor's appointments and I also realized that I am a bit of a rebel.  Yeah, that surprises me too.  Well, not a "cool" kind of rebel, like someone who is the first to dye their hair blue.  I really just mean I don't like people telling me what to do.  It's sort of a problem, actually.

It makes me very much like my son.  His biggest complaint about school is that his teacher is always making him do stuff.  And how, when she gives a "craft," he always has to do it the way SHE says.  I believe we adults would call that "following instructions."  My son doesn't like that.  He doesn't like someone telling him what to do.

The apple and the tree, you might say.  Because that is me too.  Anytime someone tells me what to do (without me asking them), it bugs me.  This little flag pops up, the mail is in!  Yeah, that is probably not a good thing.  So I struggle with maintaining a good attitude when someone comes along with advice and suggestions that are unsolicited.

OK, back to the doctor, and how it went.  I think she was happy enough with my sugars and that I had gotten the breakfast problem under control.  The good news is that I don't have to come back next week, the bad news is that I have to go back two weeks from now. 

Which means: two appointments last week, one this week, one next week (midwife), one the week after... you get the idea.  I'm so totally appointmented OUT!  And yes, in part that is a residual effect of life with Joel, but also I'll bet there are others who feel the same way about appointments very quickly.  I know, I know, I better suck this up, because if Baby is sick, there might be lots and lots of appointments.  Which is why I started trimming them down and saying no to some of those which where most obviously useless...

I guess she wants to see me in two weeks because as Baby and placenta grow, it places more demands on my insulin levels.  Still, I have the number to call if they go up and I can't control it.  I sure wish they'd just send me off on my way and then I can call them if I need them.  But no.  I must go in.

See, I understand those people who just refuse to go to doctors at all.  They have understood an important thing.  Once you go ONE time, they might FIND SOMETHING.  And if they do FIND SOMETHING, you will never, ever be free again.  You will have to keep returning and listening to them, time after time.   Ha ha ha.  (evil imaginary doctor laugh)

Anyhow, except for the part where I have to return in two weeks, and the part where she gave me suggestions for getting exercise (that was kinda like the part where the teacher tells you how to make the craft).  I know, I know, I should LOVE suggestions, but since I've been doing great at getting the exercise to keep down my sugars, and since I am a reasonably intelligent 42 year old who can figure out things like take a walk, chase my son around the house, or borrow a treadmill, yeah, let's face it.  I don't like being told what to do.  Unless I need to put together a piece of furniture.  Then I need instructions.

Silly of me to be peeved at that, at any rate.  Partly my bad human nature, and maybe partly just because I don't like appointments.  And maybe also partly because my BMI came up once again.  And I sort of hate BMI's and question a bit of their validity as it is.  And I was only between 5-10 pounds over normal for my BMI before I got pregnant, and that was partly because my body played a trick on me.

See, I thought that I was 5 foot 7&1/2 inches.  But somehow, over the last 10 years, I have lost an inch of height, but I didn't know.  So I thought my weight was better than it is, until this Christmas when my sister and I had a "whose the tallest" contest and I lost.  It was a little freaky.  I hope I don't have osteo.  Anyway, my BMI turned out to higher than I thought it was, because I turned out to be an inch shorter than I thought!

According to my endocrinologist, though, even 5 to 10 pounds overweight on your BMI is significant and lots of us out there are but we just don't realize it (HINT: that's YOU honey).

Does this all sound like grumbling?  Oh, I thought it might, because I think it might just actually BE grumbling.  But what woman likes to be told she is overweight, and that even though she lost 20 pounds the year her son died, it still wasn't good enough?  Well, not this woman, I can tell you that.

But, on the bright side.  I do have a sense of humour, I hope you could read that between the lines of my grumble session.  And one of the funny things about this diabetes thing, is that I have been praying, in the past year, that God would help me be a better homemaker.  Realizing that I might have some deficiencies.  And since being pregnant makes me feel sick, slow, huge, tired, etc., and then yet I got sick on top of that, my efforts at keeping a cleaner, nicer house were greatly sabotaged.  Which means I lack the will power to overcome these obstacles.

 So, God answered my prayer.  Now I find a great incentive to clean my house, at least two extra times a day.  I'm adding about an hour more cleaning to my daily schedule, just to keep down my after meals blood sugar.  No, to my Mother-In-Law, my house will still not be as clean as yours is.  I am pregnant, and I also have a six year old.  And I'm really not going to pull my fridge out at this late stage of pregnancy.  But I will suddenly have a much cleaner home, and my fridge is next on the slate for cleaning out, even though not under.

Which is to admit that all this diabetes stuff is not stuff I like or enjoy.  No, no.  But still, there is room here for lots of gratitude and for a change of attitude for the better.  We are working on the attitude.  Maybe if I go eat a chocolate, it will improve.  :)  (I'm so funny.)

Thanks for listening to my rant.  And Kara, thanks for sharing your comments.  So nice to hear that I am not alone in all this!  :)

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....

Tuesday, February 12, 2013

Finger poky things

Soooooo....

I did my glucose tolerance test about two weeks ago (not the one hour test, the TWO hour one) and had another confirmation that just because your pregnancy is complicated by the possibility of a genetic disorder in your baby, you are not automatically exempted from other complications.

Not that I am complaining.  It could be worse.  It could be far, far worse.  But I tested positive for impaired glucose tolerance, though not for "actual" diabetes.  Which I thought was a big relief.

Until I got to the Dr. today and she told me they would still treat me exactly the same as if I had gestational diabetes.  Urg.  I know, I know, it's all a positive thing.  I get to learn how to eat more healthily and have more motivation to shake my massive belly instead of sitting on the couch and eating cinnamon buns.  (WHICH, I'd like to point out to my SISTER, I WAS NOT DOING ANYWAY.)  Well, maybe the sitting part, but not the cinnamon bun part.  At least, not that often.

Anyhoooo.... I found out today what testing positive for impaired glucose tolerance means.  It means 2-3 times a day I will be poking a finger and using a strip to test my blood sugar level, 1-2 hours after a meal.  At first that seemed like a big downer, but the tiny finger-poky thingy really didn't hurt very much.  Peanuts really, so I don't mind.  And I get this really cool blood sugar tester with these cool strips, and I get to take a couple of tests each day.  I think I am going to be able to pass most of my tests easily, and it's always fun to take a test you can pass, right?

DISCLAIMER:  I feel a great need to apologize to anyone reading this who has actual diabetes.  I realize that you are laughing at me and shaking your head, because your life is way more complicated and if you need insulin you know all about real needles, and not tiny finger-poky type things.  No comparison, I realize.  Now, be kind and humor me as I continue to be silly.

The real good news/bad news part was about my diet and maybe my exercise.  First, the bad news.  I get a whole new food chart.  And on THIS food chart, there is a highlighted section for carbohydrates.  A very large section, because from now until at least the end of my pregnancy, the milk group (excluding cottage cheese and hard cheese) is a carbohydrate.  Also, fruit are a carbohydrate.  Also, more than a cup of beans, peas, squash, etc, is a carbo.  My diet is suddenly FULL of carbs!  :)  And the trick is not to eat more than 3-4 servings at a time.

The good news is that I don't think I'll be changing that much of my diet, as when we looked over some of my "typical" meals, they didn't typically exceed the limit.  Whew.  But I will be adding a protein to my breakfast.  And "treats" will have to be relatively rare events.

And, the really scary part, the dietitian really, really wanted to take away.... MY PRUNE JUICE!  My palms got sweaty and my heart was beating faster.  No, seriously, it happened.  Because prune juice makes my life bearable.  Yes, I have tried upping my fiber.  No, it hasn't made a difference.  Which the dietitian admitted was likely because prune juice isn't about fiber, it had a mild natural laxative in it.  It also, sadly, contains a lot of natural sugar...

So, as a compromise, we are going to try me drinking two half glasses a day at strategic times and I am going to do my darnedest to make sure I still can pass that little test after drinking it.  Which means I am about to eat a tablespoon of peanut butter, drink a half cup of prune juice and walk for half an hour to pick up my son from school, in the hopes my blood sugar stays stable. 

So prune juice is my new dessert.  :)  YAAAAAY!  (that might be sarcastic). 

Everyone seems fairly confident that once baby comes, I won't need to keep being treat for diabetes. 

But the doctor did try and get me to say yes to a study for a support group.  I said I'd think about it, which she correctly read as "No way, Jose."  I know she understood my subliminal, because she proceeded to tell me the good things about being in this study, and having support meetings to lose weight after pregnancy, and doing group walks and stuff. 

I didn't get into it with her, we just left it at that.  But if Baby has PBD, then the only support I'm going to be interested in for that first year will be respite, and someone to watch Baby to let me get any sleep at all, and if Baby is tube fed I'm not going to be able to always toddle off to meetings and group walks and stuff.  I'll have enough meetings and appointments.

And if Baby is healthy, I'm going to be OK too.  When Joel hit two years, we finally had "hit our stride" and I was able to eat healthy, exercise more, and I lost 20 pounds which I kept off.  If it takes me a little longer to lose my pregnancy weight because my life is full of other craziness and I'm at a bit higher risk of type 2 diabetes, so be it.  I'll worry about that when it happens, because sufficient to the day is the evil therein.  So there!  :)

Oh, one last good piece of news:  despite everything else, my blood pressure is totally good!  Whooo hooo!