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, 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.  :)

5 comments:

  1. You are in my prayers, friend. Love & hugs - Pamela

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  2. You and Steve are wonderful parents, I'm happy to hear that you guys are going to try for another baby.

    Melanie

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  3. I too am pleased to hear this and you are without question braver than brave to take the decision - the risks are high but the percentages are good. We hope with all our hearts you get the best possible outcome you all deserve. xxxxx

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  4. Karen: Praying you get your baby...healthy of course is preferred, but I think if it were me in this position....I would do the same thing. Thank you for sharing...this is so personal, but yet so in need of support and discussion and prayer.

    Also glad to hear "Joel's day" went well.
    Karaleen

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  5. This warms my heart, so glad to know you are going to try to have another baby. Love you guys! Carolina

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