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!





Thursday, August 30, 2012

The Summer

I guess I sort of took the summer off from this blog.  And now here I am, ready to write a post, and of course now I am asking myself how to fill in that gap.

Hmmmm....

Well, I guess I will start by saying that the hormonal fluctuations involved in the miscarriage really threw me for awhile.   Yes, normally I have strong emotional reactions to things.  I like to say that I am a passionate person.  The weird thing about the month after the miscarriage was that on one hand I had an abundance of emotional reaction, but on the other hand I felt weirdly disconnected, at times....

I'll leave that for now, and say that Steve and I finally got out to PEI to visit his family this summer.  It was a good visit and Caeden loved it.  Of course, it was hard for me.  Particularly as Joel's birthday happened during the visit, so there was that plus all the thinking about him NOT being with us on our first trip out in five years.

The beach was lovely, I have always loved the ocean. 

And it was really good and important for us to spend time with Steve's family.

I found some videos and pictures that my in-laws had which I had not yet seen.  That is not as strange as it sounds, because when Nana and Papa came for visits they took TONS of pictures each time, and not all of them ended up getting to me from PEI.  So it was beautiful to find those pictures and videos that I didn't have, both of Joel and of Caeden.

I think I am starting to feel more like myself now.  Like I said, I felt strangely disconnected at times... or ... well... just not like "myself." 

Particularly when it comes to God.  I felt disconnected from things, most especially from Him.  And what troubled me at times was that I just couldn't seem to care about that.  I'm glad that seems to be over.  I'm really glad that God understands all about strange hormonal fluctuations, and about freaky human emotions, and about how often there are things that are just not good in us when it comes to relating to Him.  And He remains faithful.

So it has been a strange summer.  And now it is about over.  There is a quote I have always liked, though I no longer have any idea who said it first.  "So, I go on, not knowing.  I would not if I might.  I would rather walk in the dark with God, then go alone in the light."

I think that shall be my motto, for the months ahead...  hope I can remember it.  :)

Sunday, July 8, 2012

Bad news, I'm afraid

Yes, there is no good way to say it, so, once again I am a statistic.  I am the one in ten confirmed pregnancies that end before the first trimester.  At least I am in good, if sad, company.

It happened over the course of the last week, which is why you didn't get a "ten week" update on Thursday.  I lost the pregnancy Friday night, after a worry-some and difficult and blue sort of week.

I told you at 8 weeks, thinking that at eight weeks things are looking pretty good, and plus, I'm not one of those people who like to suffer through killer indigestion, slight nausea, tiredness, food and smell aversions, monster hormonal/emotional shifts, all in silence.  If I'm going to be tired, grouchy, and green, I feel I have a right to a formal excuse.

And the cost of sharing the information is the risk of having to later retract it.  So here I am, to say I don't need to borrow any maternity clothes after all.  :(

But we are OK.  Disappointed, but OK.  A little miffed that I had to endure 5 weeks of so much discomfort for nothing.  And of course, sad too.  It is, for lack of a better word, a real bummer.

So back to square one, and now it will be EVEN harder.  As if it wasn't hard enough being pregnant and not stressing about the future... (yikes, I might be feeling sorry for myself.  Deep down, I do know that I am actually very blessed)  If I get pregnant again... it's going to feel different.

Which means that if, several months from now, you see me tired, grouchy, and green with a furrow in my brow and a cautious manner, you might have an idea what is going on.  That is about as positive as I can muster today.

And to say that though these sorts of events are confusing when it comes to understand what the good Lord is up to, I am still saying that God is good.  All the time.  Just thought you should know.

Thursday, June 28, 2012

Week Nine

Week nine.  Baby is the size of an olive.  That is all,  just an olive.  But if you look at the pics, it is amazing to see someone so small look so much like a baby.

Olive continues to affirm his/her presence by wreaking havoc on  my digestive system.  Oh yeah.  But there is still a part of me that does not believe.  In fact, since the indigestion has ramped up, I feel disbelief that this is actually caused by a baby.  I keep expecting to find that I have lost the pregnacy, because surely all the pain and discomfort is more in keeping with a miscarriage then a healthy pregnancy.  At times my stomach cramps have even almost seemed like that sort of onset of labour type feeling...

That's how my thinking works.  But so far, so good.  Maybe if I can finally hear a heartbeat, it will seem real.  But that remains doubtful for a while.  I go to see my mid-wife right after I hit week ten.  Most of the time, that is too soon to find the heartbeat.  Bummer.  That means waiting for another 4 or 5 weeks until my next appointment.

On Monday, it was the year anniversary of my Dad's death.  My mom spent the day at my house, and in the evening we went to the graves.  It really didn't seem real to me.  I can't believe that it has been a year since my Dad died.  Though Father's Day was a harder day for me than Monday.  Father's Day was quite difficult.  It was very sad for me.

I thought I had a lot to say.  Now I find I don't .  Still, I will try and keep everyone apprised of the situation as the weeks go on.  Not that my pregnancy is going to be that interesting (at least, I hope NOT!).  But still.  It's more for me than you.  I can't remember much of my pregnancy with Joel.  This time, I want a place to remember it all, and how it felt. 

Thursday, June 21, 2012

News

OK, I guess I'm ready to post this here on the blog.  Deep breath.  Yes, I am pregnant. 

As of today, I am at 8 weeks.  Baby is the size of a pinto bean.  Still early days.  First appointment with the mid-wife is in two weeks.  But I thought I might as well put the info on the blog and be official. 

It took two pregnancy sticks, a coupla weeks, and the onset of some very bad indigestion for me to start to believe I am pregnant.  I've only just started to be brave enough to glance at baby things and maternity clothes.

Which, I am afraid, I am going to need very soon.  It is always so embarrassing to me, how quickly I just balloon out!  I have only gained the "normal" pound or two, but I already feel as big as a house and have my belt buckle back a notch.  And I did mention the indigestion, right.  That it was REALLY BAD.

But really, I guess some of you want to know the real "nitty-gritty" of it.  How am I doing feelings-wise?

As I said, I could not believe I was pregnant, specially not so quickly.  I have not been stressed out really at all.  Partly due to disbelief.  You can't be stressed out about something that you can't believe is true... right?

And I am just, at this time, feeling peaceful about it all.  The worst odds I face are 1/4 chance that little Pinto Bean has a PBD.  I feel, at times, both happy and sad.  I am happy because I hope I shall get to hold another baby in my arms.  I am sad when I look at baby items that my baby might not be able to use.

I'm sort of living "in between" two different realities.  I'd like to get excited about all things baby, but I can't go there.  It might not happen.  So I am trying to focus on the things that remain for us with baby, healthy or not.  Baby will be tiny, and cute, and cuddly.  Baby will wear cute little outfits, and keep my from sleep.  Baby will learn to smile, and that will light up our hearts.  These are the things I allow myself to dwell on and be excited about.

On the days when I can believe that it is really happening.  Because some days I just can't believe that it really is.

Oh, and if you don't have a due date calculator handy, I am officially "due" on Feb. 2nd.  But I know better than that.  My babies come early.  So my personal prediction is that baby will come on January 25th.  ;)

Monday, June 11, 2012

This week was planting week.  I planted "Joel's" flower bed at our house, and then I planted his "garden" on his grave.  Thought I'd put up some pics for those who are interested.

So, here is a picture of Joel's name, planted in the front bed at our house.  The roses are looking awesome.  Once the flowers get established and fill out a bit, I'll put up another pic, because you should (hopefully) be able to read the name more clearly.



Right after I planted this bed, I went in and had a real eye-buster type cry.  It was a "good" cry.  I love my boy as much as ever.  And I still miss him.  I'm glad to see his name in those flowers, each day.  Just like his name is also in my heart, each day.

Here is his grave site, right after I planted it.  The perenials came up nicely from last year.  If the weather is right, it should grow and fill in nicely.  I'm looking forward to that.  I love coming to see his "garden."



Monday, April 9, 2012

News

Joel's "day" went well, if you can say that.  We watched some videos, we went to his grave and put up a new wind chime.  We cried.  And in the evening, a few close friends came by to pray and sing with us.  It was a good way to spend a day.

The hardest moment, which surprised me, came that night as I got into bed.  At that moment, I felt as if it were just happening, that first night of climbing into bed without Joel there with us.  The overwhelming sense of loss, of missing his presence there with us in the room... I wondered how I would fall asleep.  And remembered back to the day he died and wondered in amazement that I had indeed been able to fall asleep that night, and the nights after.  But I did.  And on that anniversary night I did fall asleep too, after I mourned a bit more the son that is missing...

And now I have some news to share.  Something that Steve and I have been thinking about, and praying about, and working through for quite a while now.  We have decided that we will try for another baby.

Sometimes people refer to this as "playing the baby lottery."  Taking a "chance" that our child will not be healthy.  Well, I understand what they mean.  Steve and I would both very, very much like to have a healthy child.

But I have decided, for me, that "baby lottery" doesn't apply.  It's only a lottery if you can lose.  :)  I write this with caution.  I don't want to make anyone else feel badly or hurt them because trying for another baby when you have lost a child, or have one that is ill, well, it is a painful topic.

I know.  I have gone all the way from "I'd never choose to have another pregnancy that would risk a PBD" to now saying that I will be...happy? to have another one.  I understand the pain involved in this.  Well, honestly, there is still pain involved for me.  I'm hardly going to be escaping any pain if we get pregnant with a child who is terminally ill.

It has been an interesting progression in my own heart and mind to reach this choice.  I realized that I did truly believe in my heart that Joel's life had been mostly happy.  That his life was a huge blessing to me was never a doubt, but in spite of the sickness and suffering, I am sure he was happy to live.  And as I truly believe that he is now safely, joyfully, in heaven with God...well, how was it not worth it?

Then it was Caeden holding me back.  I just thought "How could I ask Caeden to have another sick sibling?"  But as time has gone on, I have changed my thinking on that as well.  I won't bore you with all the details, indeed, some of it is hard to explain... it's so "instinctive," but I just felt that perhaps in the end what was important was not whether or not he had a sibling either healthy or ill, but more how his parents parented him, and what place God has in our home.

And then, when those two reasons were out of the way... well, then it really hit me.  I was afraid.  Very afraid.  I realized that I (me personally) had no reason not to have a baby... other than the fact that having another dying child scared the poop out of me.  In a sense, it still does.  I hope I have never given the impression that loving and caring for a sick and dying person is easy in any way. 

But I remembered that I didn't do it in my own strength the first time.  I had lots of help from friends and family.  But most of all, I had help from God.  "The Lord is my Helper, I will not be afraid..."

And I thought about it.  Which was the option I truly wanted the least?  There are three things that could happen.  1. we could have a healthy child (yes, my favorite option)  2. we could have another child with a PBD, or 3. we would have no baby at all.  And I realized that option 3 was the one I LEAST wanted.

Now you might be wondering what happened to the adoption option?  Well, it is on the side burner for now.  We will see.  Right now, we can not afford a private adoption which is the most likely way to adopt a baby.  Going through "the state," well, chances of a baby are pretty slim, this year there were only 4 adoptions of children under a year old in my province.

And when it came to adopting an older child... it's a lot of explanation as well, so let me just say that for our family as a whole, at this time, it just is not the right choice.  Things can change, of course.  But adopting an older child can be pretty challenging.  I have seen that in real life so to speak.  And we are not ready for that at this time, and there is no guarantee we will ever be.

So when I realized that if it were to go on being just Steve, Caeden and I... well... that I think 10 years from now I would regret that we didn't try to add another child to our family... when I realized that I would rather love a child, care for a child, stress over a child, hurt and sorrow over a child, and lose that child, then not have that baby at all...

it just seemed like the right choice would be to try for a baby and leave it in God's hands.

I can't really lose.  If we have a healthy baby - I will be ecstatic.  If we have a baby with PBD, you may still congratulate me, because I am going to enjoy every precious moment I can.  There will be tears in my eyes, and they will be of both sorrow and joy.  And if we have no baby at all, then we will wait on God and see if at a later date another option for growing our family opens up.  In any case, I will go on learning to do what I am learning to do... trust in the Lord God Almighty.

I wanted to share that here.  I am asking family and friends on board with this, because I may be sad if there is no baby and I want to be able to share that sadness openly.  And of course, if there is a sick baby, I am hoping that there will be people who will still support us, even if we have choosen this.  I don't ask because I think people are in any way obligated to support us.  You are not.  I just hope that you want to.  :)

Monday, March 19, 2012

Plan for March 23rd.

March 23rd is almost here.  There has been a lot of emotion in the last couple weeks, and I have been very, very tired.

But I am ok.  Or maybe even I am good.  There are things much worse than being emotional and tired. 

I think I have decided what I'd like to do on Friday, and Steve has concurred with his usual "sounds good."  I think he thinks he is doing everything to help me, and I think that it will actually be good for him too.  :)  Thus is a good marriage made, right?

Steve's work has graciously, very graciously, allowed him the day off work.  Normal that particular day is "don't even ask, don't even think of asking" for it, but he has been treated very graciously and given the day off with pay, which was unexpected.

So we will take it easy and rest.  We will go to Joel's grave, and bring out with us a lovely new hummingbird wind chime.  And we will clean it up and fix it up.

On Friday night I have invited our church family to come over for an evening of singing and prayer.  It's a special way to remember Joel, because they came to sing to him twice before.  It is also something I'd like to do, because we will sing praise and thanks songs to God, and I would like to spend that evening just thanking God for giving me my son.  It wasn't long enough for me, but also every single day was a gift, and I am very grateful.

And we will have a prayer time too.  A special prayer time, to pray for all of the "Joel people."  Those are my special people, whom I met because of Joel.  They include medical people, and respite people and the families of other children with Joel's condition.  So if you are one of those people, we'll be thinking of you on Friday night!

I really couldn't think of a better way to spend the evening of March 23rd than thanking God and praying for people that God brought us to love, through Joel's beautiful life.

P.S.  If any of you would like to join me and my church family on Friday, you would also be welcome.  Just give me a call, so that I know who I am expecting.  :)