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, April 21, 2011

Story Time: Part Two

This is the continuation of the previous blog.  Read that one first.  ;)  I will, of course, be putting more pictures into the book.  But I did want to put in a few here, for you to see.  :)  Sometimes grown ups like pictures too.

The Story of My Family

Before I was born, my Mommy and Daddy met each other when they both started teaching at the same school.  When they met, they liked each other.  After awhile, they really liked each other.  And after awhile longer, they loved each other.







And that is when they decided they should get married, and be a family together.



For a little while, it was just my Mommy and Daddy.  Then they decided that they would really like to have a child to be part of the family too.  And so I, Caeden Kenneth Merton Smith, was born.




It wasn't too long until my Mommy and Daddy decided that a brother or sister should also join our family, and soon we were waiting for a baby to come.

But then a sad thing happened.  When a baby is making it's body, it needs some instructions.  So the Mommy gives the baby a set of instructions, and the Daddy gives the baby a set of instructions too.  These instructions are called genes, but they are not made of cloth, like pants are. These genes are made up of something called DNA.

The gene instructions tell the baby how to make a heart, and a tummy, and all the "inside of them" stuff.  And they tell the baby how to make arms and legs, and eyes and ears.  They even tell the baby if their eyes should be blue or brown, and what colour their hair should be.

Something sad happened when our new baby was getting instructions on how to grow a body.  There was a mistake in the instructions Mommy gave the baby.  And there was a mistake in the instructions that Daddy gave the baby.

So when the baby was trying to grow a body, the body could not grow right.  The only instructions the baby could find for making a part of the body called peroxisomes, had mistakes.  And so when the baby made peroxisomes, they had mistakes too, and could not work right.

This baby was my brother, Joel.  When my brother Joel was born, he had this problem with his body, called a PBD.



I was a good big brother.  I helped my Mommy by getting her blankets, or a soother for baby Joel.  I tried to be patient and wait my turn, when my brother was crying.  And I talked to my brother and brought him toys.  I even turned on his music for him to listen to.



Mommy, Daddy, and I loved Joel.  And he loved us too.  He really liked to hear my voice.  And he especially loved it when I had friends over to play.  He loved to hear our games.  And every night I would kiss him good night, and Joel knew that I loved him.




Even though we loved Joel, something sad was happening.  Because of the mistakes in his body, because Joel's peroxisomes were not working right, his body got more and more broken.  Even the doctors could not fix this.  They did not know how to give his body the right instructions to work properly.  Everybody tried really hard to help Joel's body, but no one could fix this problem.



One day when Joel was two years old, his body got so broken that it stopped working.  And Joel's body died.  So Joel left his body behind, and God took him up to a new home in heaven.

Everyone was very sad when this happened.  But Mommy and Daddy were also glad that when Joel's body stopped working, God took Joel to heaven to be happy and safe.

One day we will all be together again in heaven.  Until that day, Mommy, Daddy and I will have lots of other adventures.  Who know what will happen next in the story of my family?



1 comment:

  1. Karen...this is perfect for Caeden. I love it. I am trying to make similar books for my kids about how they were made (our son through IVF and our daughter through embryo adoption)....I think it is so important they know the story of their family and where they fit in. I really think Caeden will find a lot of comfort in this as he grows older and memories get fuzzy.

    hugs to you.

    Karaleen

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