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!





Sunday, October 21, 2012

Peach, Fist, or Kit-Kat bar

At this point in my pregnancy, I have realized that no one really knows the size of my baby!  It all depends where you look up the info.  I think that is because Baby could measure (from head to bum) anywhere from 3&1/4 inches to 4 inches or so.

Anyway, I am now between week 14 and week 15.  This is exciting, because once I hit week 16, I start "listening" every day to see if I can feel Baby move.  Pregnancy is a lot more fun, once you can feel Baby.  Though I am still having my fair share of nausea...

This week, a note came home from Kindergarten.  The note asked me to supply a family picture for Caeden to take in for "Show & Tell" as part of the unit "About Me."

I sat for a few minutes mulling that over.  Then I turned to tell Caeden I needed to print up a family picture for him to take to school.  He told me that was not possible, because his family was too big to fit in just one picture.  That made me smile, because of course, we certainly don't have any picture that has four grandparents, three uncles, three aunties and five cousins all together in it.

So I asked him, "Tell me what people do YOU think should be in the picture if it is of your family?"  I hoped that my voice was neutral and that nothing betrayed my feelings.  Five year olds shouldn't feel pressure from their mommies to put dead siblings into photos, right?  And he said "Mommy, Daddy and me."  And I said "OK, I can get you a picture like that."  Hoping again that my voice was neutral.  Then he said "No, wait, I want a picture of Mommy, Daddy, AND JOEL, and me."  And I said "OK, I can do that for you too."

It was a blessing to hear him say that.  And of course, it made me think.  Because Joel is fading rapidly from his memory.  In fact, he has often not recognized Joel in old pictures anymore, even though he pretty much always mentions him  if someone asks about our family, or if he has any brothers or sisters.  But that is because Joel is a concept he understands, but not really a person he knows...

And it is a blessing that now, he still wants to have a picture with Joel in it to show to people.  Yet I know it isn't reasonable to expect a 10 year old, or especially a 15 year old Caeden to want to tell everyone about his dead sibling at "Show & Tell."  He might grow up to be that sort of boy, that kid who just tells people "I had a brother who died when I was 4" but then it will continue "but I really don't remember him anymore."

And that is a blessing AND a sadness.  It has been a blessing that Caeden was so young when Joel died.  It causes him some anxiety, confusion, fear, etc.   But at age 4, it is A LOT different losing a 2 year old brother who never could play with you, then it would have been if Caeden had been 7 or 8.  He has no sorrow, today, about his brother.  He might have an occasional bout of wistfulness, wishing he had a sibling to play with, etc.   But he has no sorrow about it.  My son has no scars on him either.

But the sadness is that Joel is only a concept and not a person to my oldest son.  He can't remember Joel.  The whole experience is lost to him, both the good, and the bad.  A blessing, and a sadness.

Which of course brings us round to Baby.  Right now, he is pretty excited about Baby.  He is greatly hoping for a girl.  Today, he has an older friend over playing with him.  This boy is 8.  And Caeden announced at lunch time, right in front of his older friend, "I hope that I get a sister, because then I can play Barbies with her."  Fortunately his friend replied "I used to play Barbies with my sister."

No point in mentioning that even if Baby is a girl, by the time she wants to play Barbies, Barbies will be the LAST thing on Caeden's mind.  Barbies will not be fun, but will be the supreme test of sibling loyalty and love...

Baby might not be around to play Barbies, either. 

And I am going to say something shocking.  I am excited to think this baby could be healthy, and to think of Caeden playing peek a boo, and patty cake, and stacking blocks with Baby and all those things.  And I am ALSO excited to think about Caeden learning gentleness, patience, and unconditional love if Baby can not ever to any of those things.  I feel blessed at the thought of a healthy sibling for him.  And I feel blessed at the thought of a sibling that will teach him other, different lessons.  Because  (The Lord is on my side, I will not be afraid) either way my son will be blessed.  He will just be blessed differently.

As will I.  As will I.  There is a blessing coming in this child.  What sort of blessing I do not know.  And in the middle of a long, lonely night of crying, I will not feel it.  But the blessing is there, and I am trusting God in it.

P.S. If you meet me a year from now with bags under my eyes, and shoulders in tension knots, and tear stained cheeks, don't remind me I wrote this.  Just put your arms around me and hug me.  I'll remember I wrote this later.  :)

Wednesday, October 10, 2012

13 Weeks

Today I had an appointment with a genetic doctor.  It was not an appointment I had originally wanted.  In fact, last week Thursday when I got the call telling me about the appointment, I was pretty angry about it.  I thought when I had my Dr.s appointment on Wednesday, I had been pretty clear that I thought it was neither necessary nor helpful to go see a genetic specialist. 

After all, 1. Steve and I were keeping the baby "as is."  2. We were not willing to do any invasive testing, because invasive testing carries a risk, and see #1.  and 3. there is no non-invasive test that can tell us what we really want to know, which is if our baby has a PBD or not.

But still, I ended up with an appointment.  And as the week went on, my attitude improved.  Specially when I finally just decided to take my book of picture of Joel.  I figured if I had to listen to a whole speech about genetic testing, I could at least have the opportunity to share Joel.  And instead of feeling upset that I might have to "justify" my choice, I could feel thankful for a chance to share a different view of what this pregnancy and baby could mean.

So I went, and the appointment was a pleasant surprise to me. 

  To be fair, I expected it to be more of the same thing I got from my Dr.  Who is very kind, but appeared skeptical when I said we wanted to keep the pregnancy.  Who, even though there was an excited look on my face about the baby's heartbeat, even though I cried tears of joy at it, even though I don't think there was anything but sincere happiness when I told her we were keeping the pregnancy no matter what, STILL felt it necessary to say things like:  "well, you still might want testing so that that you can really think about the decision.  And then when the results come back, if you start to feel things are too stressful, or you start to worry about how it will affect your family, you can still change your mind."

And I thought "If I go in to Mr. Genetic Specialist and he starts saying that sort of thing to me, I will vomit."

But he didn't.  He totally took me by surprise, actually.  I didn't have to wait a minute to see him.  I went in and sat down, and you know the first thing he said to me?  He said "So, tell me from your perspective why you have this appointment to see me today?"  And after that, everything just went well.  :)

I told him that I thought I was there in order to make my Dr. feel better.  Yup, I was just honest and up front.  I explained that we were keeping the baby, and that we had been thinking about our decision for several years before we even decided to get pregnant.  We chatted about the pros and cons of doing the non-invasive screening for Down's Syndrome, Trisomy 18, etc.  And he was really up front and honest about just how many "false positives" there were if you didn't take it a step further to an amnio.  He even warned me that some women find it more worrying than helpful in the case that they were not going to test further.

The best part of it all was that he never gave me the slightest inkling that he was secretly thinking "Oh, you must not have thought this through" or "Are you in denial about the risks?" or "It's not a good decision not to test and then make a choice."  I'm pretty good at reading people, and I didn't get a sniff of that.  Instead, I really felt like he respected my decision, and trusted that I was happy with it.  I don't think he thought I was crazy, or being "forced" to keep my baby through misguided "religious" principles. 

In fact (though we both knew there are no guarantees), he said the nicest, most "You are not crazy" thing to me when I left.  He said "The odds are in your favor for a healthy baby.  If I were to lay money on it, I would have to put my money on the baby being healthy."  And even though I know that for every good statistic, there is a different stat, and that stat has a face, still, it was really nice to hear that from a genetic specialist.  And I could tell him that even if the baby were not healthy, we felt that Joel had been a blessing to us.  And I was happy to be able to say that, too.

Oh, and another nice perk to the visit was that he told me he'd be sending a letter to my Dr. outlining our discussion and decision.  (read between the lines, the issue is dealt with and closed!)  And that he would be sending a letter to Joel's genetic/metabolic specialist that said that we were expecting again.  And that was really great to know.

And isn't this really odd?  After my appointment, the pregnancy really seemed real to me.  (Maybe because something I had been dreading for months now had been dealt with.)  And a little bit exciting, I gotta say.  I think sometime this week, I will go out and do a little baby shopping.  Not too much, because we don't know boy or girl.  But just a little.  Because I find myself in the mood....

I find myself feeling very, very thankful.  Missing Joel, but so grateful for his life.  And so grateful for another chance to have a child.  God is good.

Wednesday, October 3, 2012

12 Weeks

So, today was back to the doctor for the real deal check up.  I can say that the good news is that my blood pressure was normal.  That surprised me.  I keep expecting it to be high!  Everything else seemed OK on preliminary exam, though of course, some results I will have to wait to get.

We heard the heart beat once again, and Caeden got to hear it too.

So the pregnancy is starting to feel more real, more like a baby really is going to arrive in April.

And today the doctor brought up the subject of my age, and testing for some of the things my age makes baby at higher risk for.  Ugh.   A talk I had been dreading.  My emotional reactions are so crazy.  I told her about Joel and what my real concern is (one in 200 for DS vs 1 in 4 for PBD).  I said it all without any tears or choking up.  And not until she got into her spiel about  the different tests, etc. did I feel tears suddenly well up in my eyes.  And then, of course, I thought, get a gripe girl!  THIS is not the time or place to cry!  And I didn't cry till I got in the car to drive home...  I cried for Joel, and I cried for baby, because I love baby and never what to let baby go either.

So today I was re-debating the issue to test or not to test.  I checked with the nicest Dr. ever, Dr. Raymond from KKI in the states who confirmed what I suspected.  There is NO non-invasive test for PBD.  And though I really, really would like to know if this baby is healthy or not before it arrives, I really couldn't take the chance that my baby would be the one in a hundred or two hundred that miscarried because of a test that is not necessary for us.

There is only one solution that I can see here.  Time.  If I wait till April, I'll know for sure.

Meantime, I may/may not be feeling better.  I still can't say for sure, still having good days/bad days.  But food does seem to slowly be regaining it's appeal.  Though my weight today was 161 lbs, just a pound or two higher than what I started with, my pants.  have.   got. to.  go.   Oh yeah.  I LOVE these jeans, but they are just not cutting it anymore.

And I feel secure enough now, to at least go out and buy a pair of pregnancy jeans.  If I can find any that fit.  All the ones loaned to me are about an inch to short.  :(    I don't want to wear flood pants for the whole pregnancy.  Anyone know any company that is sane enough to understand that even taller people get pregnant and that not everyone in the world has a 32 inch inseam???

And last of all:  YAAAAAAAAAAY!!!!!!!!  A BABY IS COMING!!!!

(I think)  ;)