Sadness doesn’t even come close

My boy is going to die soon.  He has been diagnosed with a degenerative brain disorder.  He is almost 4 now and we will be “lucky” if he sees 6 years old.  There are is no cure.  All we can do is try to keep him comfortable.

I alternate between numbness and weeping.  He’s such a happy little guy and he doesn’t deserve this.  It is a horrible disease.
We’re thinking of getting him a Pleo to play with as he loves dinosaurs.  I would be interested in hearing from people who have one to see if it is worth getting one for a small child.

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5 Comments

  1. Oh shit. I had been following your blog for no particular reason, just to get updates about httpmail when I was still using it.

    Anyway this touched me : my son is 2, and I just can imagine how hard I must be. Parents should never have to see their kids die.

  2. Hi Daniel,

    I cannot find words to tell you how sad I fell when I saw your RSS in my computer.

    I have a two years old boy. We wait until so long to have him and seen him growing day after day is priceless, so I can imagine what you guys are suffering.

    My wife is a physician doing a fellowship at the Sick Kids in Toronto (Canada), and it is very hard for her to see kids suffering and having a young boy at home.

    I don’t like to go there because I cannot imagine my son sick.

    I wish you all good… sorry I cannot find good words to comfortable you

  3. We also have shed many tears. It is a real kick in the guts. Hugs to you my boy, and to your boy. 🙁

    Our prayers too.
    Mom and Dad.

  4. Hey Daniel,
    I dont see how any child could not love the Pleo. it looks so lovable and clever.

    Much love and prayers from the family.

  5. Hi Daniel,

    I re-found your blog just now having back tracked about the forth stuff we were speaking about late last year, and then found this.

    I am so sorry for your entire family. My own daughter has Cystic Fibrosis, so I have a level of understanding of what you are facing. I pray that you will all find a path through it.

    It may be of little consolation, but I work on the basis that the brightest flames may not burn for the longest times, but they change the world while they burn.

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