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, October 27, 2011

Children.

Oh boy, my blog has been so neglected...  and right now I don't have much time, so I will be brief.


First of all, the good news: Star is at home!  She is doing really well, and for the time being, Jun thinks she's ok with out a CPAP.  She's making her own arrangements for an Oximeter.  I wanted to put up some happy pictures for you to enjoy.  These pictures are so beautiful...  Star, back with her loving family.

The sad news is that the more the Facebook GFPD group grows, the more kids that I get to know who die...  I had to say that in my usual un-euphemistic way.  This last weekend two children died.  One of them was Ilan, I put up a blog connection to his mom's blog a while back.  She hasn't been able to update her blog in a long time, and I don't know when or if she will now, but I wanted to let you know.  She is a special person in my eyes.

There are a couple of other kids from the group that are not doing so great right now either.  It is the same as it was with Joel.  He got sick or was hospitalized so many times.   We never knew which time was THE time, until it suddenly was, and he died.  So each time one of these other children is really sick, I feel the tension of it.  Two of these kids I have never even met, but I see Joel's face when I look at them.  Kyarah and Justin.  Pray for them, and the families.

And the other child who has been sick is Clayton.  You saw some pictures of me on my blog from the conference this summer.  Pictures of me holding him, and loving him up.  I bawled, holding him was so much like holding Joel and he was an absolute sweetheart, just like Joel.  Clayton turned and cuddled right in to me, with a big smile and happy babbling...

You might think this is hard on me... watching other sick kids like Joel, grow weaker or sick from time to time and then sometimes they die.  I can't say it doesn't hurt.  But I am happy to be a part of these lives.  And the truth of the matter is that often what really hurts me is the feeling that while Joel's death is so fresh to me, and while it still feels like I should be able to walk into a room and see him there, that the rest of the world forgets...   That in a sense his life is forgotten or even in a strange way, erased...  It is hard to explain this to someone who has not experienced it.  Joel is my child, and I can't leave him behind in my past like a totalled car, or a once favorite pair of shoes, or a childhood sweetheart.  He IS my child...

Like I said, it is hard to explain.  If you don't understand it, I'm glad, because that means you have never lost a child. 

To end off, I'll say I am so glad and privileged to know these other children.  I hope that if that terrible day comes sooner rather than later, that the fact that I knew their children, and will remember them, will mean something to the heartbroken parents.

Until then, I am so glad that Star came home.  May there be many more happy and healthy days for her and her family! 

No comments:

Post a Comment