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!





Tuesday, December 18, 2012

Baby Girl

Here I am at 23 weeks.  Baby's movements can now be felt when a hand is placed on my huge belly.  In fact, last night Steve and I enjoyed just lying in bed and feeling Baby bounce around.  I imagined what I felt, little feet, tiny fists, knees or a backside.

It has also been a bit difficult in last weeks as well.  Tis the season, the season where we might really miss the faces we can no longer see.  Which means I have really been missing Joel and my Dad as well.  I don't know if the tiredness that sometimes overwhelms me is because of the pregnancy or because of the emotions and the grief.  But I take it easy, I am fortunate that I can, and I often take a nap during the day.

It's also been something new, the realization that this Baby is a girl.  Maybe this seems strange, or worse, very unseemly, but it has opened up a new set of grief possibilities.  I mean that in a sense, there has been a new sadness in thinking that our girl-baby might have a PBD.

NOT because it's worse when a girl is ill or dies.  Children are children.  Losing a child is just... hard to explain if you have not been there.  I wept many times this week, thinking of the people who lost a 6 or 7 year old, knowing they had been absolutely blindsided by their sudden appearance in the land of child loss.  Here in the world of grief so suddenly, with no warning at all.  At least I know ahead of time...

But I am off topic.  Here is the thing about a girl.  A girl just is different from a boy.  They are.  And girl children are a different relationship and a different set of losses.  A whole new set of "what ifs" to think about.  That might be hard to understand, but there it is.  If this Baby had been male, then I had already grieved once "the boy stuff."  In fact, I am so blessed to have experienced a son once already in Caeden.

It is strange, I acknowledge, that expecting another boy did not make me grieve not having a daughter, but having a daughter who might not live past her fifth birthday makes me grieve very specifically the loss of having a daughter.  But it is so.  There is something about losing what was possible and became impossible.

So when we realized Baby was girl, then we started thinking about father-daughter dates, and tea parties, and dolls, fluffy dresses, and when we'd allow make-up (if ever!).  You know.  Those sort of things.  Because a daughter is just a different relationship from a son.  And losing a daughter would be a bit different from losing a son.  No less or more painful to be sure.  But full of sudden grief realizations we hadn't had before.

A bit of something to work through.  Don't think I'm not super excited about a daughter on the way, though.  I am.  I have picked up a few girl clothes items.  We have our name picked, and when we are alone, we call Baby by her name.  We can't wait to hold her.

A strange fact: I have started to dream lots about Baby being born, and in every dream so far, she has been a boy!  Does this mean I can't really believe she is a girl?  I don't know, but that part makes me laugh, another dream of a boy baby as if I am in some sort of gender denial!  And in some of my dreams, Baby is a healthy boy.  And in some of my dreams Baby has a PBD.  Maybe that pretty much sums it up.

Now I better go.  My son is hungry.  He needs food!  He is growing like a weed, an inch since September.

Thanks all who pray for me during this time.  I appreciate it very much.

Tuesday, December 11, 2012

This post is just to point out I put a couple of 'new' pictures on the sidebar.  Lately Steve has been asking me why there are no picture of him up there.  So, I figured I better put a few up.  I never meant to exclude Daddy.  :)

I wish I had more pictures of Steve and Joel, but pickings are slim.  Not because Steve was not holding Joel or playing with him, because Steve did that every single day.  Just because Daddy was the camera guy and the camera guy never gets pictures of himself.  And if Daddy had Joel, Mommy beat a hasty exit to make the supper, or clean the kitchen, or maybe just take a nap.  I feel sad now that it never occurred to me to take more pictures of Steve with Joel.  I sure wish I had.

I tend to leave Steve out of this blog, because I sort of feel like he needs his privacy and I don't want to drag him and his feelings out onto my blog when he might not want them there.  So maybe he is a bit of a "gap" in the story at times.

But let me say this for the record.  He is one heck of a Daddy.  He loved Joel, he held him and talked to him and played with him and worried over him and loved him.  Not a week goes by that he doesn't tell me how much he misses holding Joel's little feet in his hand (he always used to rub them, because Joel liked it) or how Joel's hair smelled (because Joel smelled awesome all the time).

And because of Steve, I was able to stay home with our son and care for him myself.  I was also able to stay home with Caeden after Joel died, and spend time recovering myself and my son.  Steve is a great dad, and a great husband.  We love him very much.  I thank God for my husband.  And the rest of it is private, personal, and confidential.  :)

Monday, November 26, 2012

An Interesting Morning

OK, we had a small scare this weekend, but I don't want anyone to get all worried after the fact.  Everything is OK, at this time.  So no one freak out, OK?  (boy, three "OK's" in a row)

On Sunday morning I woke up with a dull back-ache and a "menstrual cramping" feeling across my abdomen.  It felt exactly the the cramps I had the week before my last miscarriage, and if you look it up in the baby book, it is listed as a symptom of miscarriage.

So we were pretty worried.  We went in to emergency where we discovered that Baby had a good, strong heartbeat.  And that my uterus was nice and soft (and thus not having hard contractions).  Which was a relief.  We did blood work and a pee test in case my symptoms were the result of a UTI, and they sent us home with instructions for me to take Tylenol for the pain and to rest and take it easy.  They scheduled me in for an ultra sound Monday (today).

We were feeling better as we drove home.  Still a bit worried, though, as my pain was continuing and as the Dr. warned that he really couldn't say one way or the other if I were indeed losing the baby.

Today we went in for the ultrasound.  I was feeling much, much better both physically and emotionally as last night the pain had greatly subsided, and this morning I no pain at all.

The ultrasound was also encouraging.  They check the baby's placenta and the mommy's cervix.  While technically the tech (hee hee, that sounds funny) can not diagnose anything, I took it as a very good sign that there was no emergency since they let me go without a doctor coming to talk to me.  My doctor gets the final report to share the details with me, but I am pretty sure that if Baby was in danger of dropping out of me any minute, they would not have sent me off without warning me and ordering me to stay off my feet.

Baby is beautiful, by the way.  I saw a face, and a brain, kidneys, a heart, bladder, tummy, arms, hands, legs, feet.  :)  I even saw the lips and nose.

Wanna know what I DIDN'T see?  Oh, I just bet you do!!  Well, first let me say that the tech warned us that the angle was not perfect, and that there is enough of a margin of error that she wouldn't record the sex of the baby on the official report.  But we all agreed (even the tech) that baby did not appear able to pee standing up!

(disclaimer) NO REFUNDS IN CASE OF DISAPPOINTMENT LATER

but....

It seems that Baby is a girl!!!!

Which was a total shock to me.  Seriously, I was in shock.  I was expecting a boy, I think.  I still can not believe it.  I wanted to tell Steve to take me out to buy the cutest little dress ever, but I was afraid Baby had tricked us.

Because I can tell you that Baby has a mind of her own.  She did what she wanted to do, and our ultrasound be hanged!  I have never had to flip and flop on an u/s table like that before.  For both boys I lay on my back and I am pretty sure I stayed there the whole time.  The tech never did get one or two of the pictures of Baby's heart that she needed, because Baby just refused to turn to the right angle for her.  I got up to pee to shift her, and while she did move, it didn't help.  I lay on my right side, and then my left side, and then my back and then my right side and then my left side.. you get the picture.  I was very amused, but now I have to go back on Friday for about 5 minutes of u/s photos.  :)

In fact, she didn't let Daddy and Caeden see her face either.  The tech got it and I saw it, but by the time the boys came in, she had firmly placed herself face down.

Hope you are still with me through all this details, I mostly put em in for the relatives who read this and actually care.  The rest of you are welcome to have snored through the play by play.

For now, Baby is moving.  I have no more cramps.  And the ultrasound tech didn't look worried.  So I am going to relax and not worry about it, unless there are further developments.  It looks to me like a false alarm.  Whew.  Thank you God. 

Wednesday, November 21, 2012

Just about half way there!

So, here I am at nineteen weeks....!

I started to feel Baby moving at about 16 weeks, and each week the movements get a bit stronger and more frequent.  I am really looking forward to the day when Steve and Caeden will be able to share in that, because Baby is big enough to make his/her presence known to the outside too.

Baby continues to be more "real" to me.  By which I mean that my brain is starting to conceive the idea that come some day in April, there will be a very small little human being living in my house.  Which is very exciting, but of course, not without it's share of very strong emotions both positive and then the more difficult.

Because it is all a big, big unknown.  And most days I feel fairly happy and excited about it.  But also...

Two nights ago I had a dream about Baby's arrival.  In my dream, I was newly home from hospital and was caring for Baby and nursing him (it was a boy, and NO, I DO NOT think this dream was in any way prophetic!).    Then in my dream it occurred to me that I was home from the hospital and no one had even checked or tested Baby for PBD.  So I put my hand on Baby's small little head and felt... huge sutures still unknit in the bones of his head and a large fontanel...  In my dream it felt just EXACTLY like Joel's head had felt, even though in waking life, I have been having a hard time remembering exactly what Joel's newborn head felt like.

And then the emotions hit me.  I wept, because Caeden wanted a healthy sister, and he was getting a sick little brother, another Joel.  And I wept for Baby, because I love Baby so much and I want to feel a healthy little head that can grow and develop and not get sick one day and die.  Of course that is what I want.  And in my dream, the emotions of it hit me, and I wept.

Which made for an interesting day of thinking yesterday, after I woke up.  Things do look different in the light of day, though.  Thank the good Lord.

I read an adoption story recently, where a mom shared their experience with fostering to adopt.  That mom was saying that people who foster adopt need to be people capable of faith.  She was talking about having faith that they could love a child and let it go, faith that going back to the child's family really could be best for the child, faith that they could survive the pain of letting that child go.  That sort of thing.  That resonated with me.

Because this experience is all about faith for me too, only I put my faith in God, not my own abilities which are admittedly often quite sparse and unimpressive.  This Baby is a child of faith.  Not that I believe God will give me a healthy child, though surely I hope that very strongly.  The faith part isn't believing I'll get what I wish, but rather that if I get what I do not want, there will be grace sufficient for me to be joyful and peaceful and content, not in getting what I want, but being made able to want what I have gotten.  And in a sense, I am already grateful and happy with what I've got, even if it is not what I want.  Confused yet?

I am believing that God is faithful and will give me the strength to care for Baby, even is there is no sleep, or even when there are doctors and symptoms and stress.  I am believing that God is faithful to give me great love for Baby and still survive the pain of one day losing my child.

None of that faith makes it easier for me to suffer the stress or pain or loss.  I mean, the pain of surgery hurts whether you have trust the doctor knows what he is doing or not.  But it does give me courage.  That is a different thing, and it is not courage that is innate or part of my character.  It is courage that just springs from the trust I have in God that He has carried me through, and will carry me through, even in the darkest and most difficult parts.  Even knowing already a little bit of just how dark and difficult it can be.

And it means that even though now some days are crying days as I miss Joel or think about the difficulties that lie ahead, I am still full of joy about this little one jumping around inside of me.

I still don't have my date for my ultrasound.  It's gotta arrive soon, as they usually want to do it before you hit over 22 weeks.  I can't wait to get that done.  :)  It is scary for me, and exciting too.  It won't tell me if Baby has PBD, but at least I will know that major organs are all looking good.

Awhile back, Caeden admitted to Steve and I that "I was sometimes jealous of Joel."  It was so good to hear him understand that and admit it so we could talk about it.  Whew, what a blessing to have that in the open for him, so that when Baby arrives we can continue the discussion as necessary.  Because sick or healthy baby, Caeden is bound to have some moments of jealously.  Even now, as my lap gets smaller and smaller, it is a bit hard for him.  I'm trying to get across the message that sitting next to mommy with her arm around you is still a good thing.  What I'll do when both arms are holding Baby, only God knows!  But I trust Him to share that wisdom with me, when the time comes.

BTW, my belly is HUGE.  Already.  Yikes!  It's always like that for me, I seem enormous and I'm only halfway through.  I've only gained 8 pounds, which is the lower side of average for my dates, so it's not like I'm packing on the pounds.  But I'm ready to topple over with each step.  Maybe one day I'll put up a front and side picture.  From the front, it really doesn't look bad at all.  Then you get the side shot...  :)  My mother in law would love to see those pictures up here. 

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)  ;)