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!





Friday, May 28, 2010

For granted

I'm going to officially say that our "good time" is now officially over. Not only has it been tough sloughing ever since Joel developed breathing problems about 2 months ago, but today there was more bad news, though not about Joel.

My Dad's leukemia is no longer in remission. It is back. This time, cause they were looking out for it, he got to the hospital in much "better shape" than the last time. His oncologist was sounding hopeful, and that was a good sign. He thinks my dad will not be in hospital for the same length of time as he was last year. Last year he was in for 6 weeks. So now we are hoping for less.

I guess it really could be worse, but... Let's just say that even if my Dad gets another remission, we really won't be able to breathe easy about it. Once you have lost your first remission things just look a bit different. I guess you could just say that the optimism about beating the disease has worn off quite a bit.

Spring is usually my favorite time of year, but the last two springs have been sort of yucky. As an understatement I guess. But right now I am living in denial. Well, that is not really correct. I don't have many illusions to cling to anymore. So instead I am just avoiding it all by escaping from thinking about it. In between hospital visits, sicknesses, all that stuff, I just avoid the issue by distracting myself.

This blog wasn't really supposed to be about my Dad though. Originally, before I got the call today with the bad news, it was going to be about a little pet peeve I have.

I sort of hesitate to write about it. Once again, I don't want to make anyone feel bad. I say it is a pet peeve, cause a pet peeve carries with it the implicit understanding that the actual behavior of another person might not really be offensive to most people. That it is only troubling to the one particular person whom it bothers. Or few people, as the case may be.

And I don't think this is something that really annoys me. It more pains me. And with that pain comes a bit of frustration. Because pain will make you frustrated.

Anyway, I decided to write about it. Cause I think it might be good for other people to think about this and understand it. Think about it all in a different light.

You see, when it came to Caeden, people would tell me "Enjoy this stage while you can. It'll be over before you know it." And that does seem like a good thing to do. It seems like not taking for granted the precious times you have with your child before everything changes. It's not that I don't respect that.

Funny thing is, that when you are wistful about all the changes your child is making, you are taking something else for granted. And that is just how wonderful all those changes really are. Something that I can never again take for granted.

So now, when I stand in a group of moms and hear those words, well, it really hurts. I heard them again just this Tuesday while waiting for Caeden at nursery school. A mom lamenting that her child was "growing up so fast." Changing so quickly and she just wanted to enjoy the stage her little one was at.

I do understand what people mean when they say that. It sure does hurt me though. Because I would absolutely give anything to see Joel get out of the stage he is in. Even that little tooth is still just barely a roughness in his gums, after months of waiting. My little boy is never growing up. The only stages he has are downhill ones.

And sometimes I just want to say in reply to those moms: "You don't know how lucky you are. You might miss this stage when it is gone, but it is nothing like the pain you would feel if this stage never passed. Your child is changing every day, and that is a tremendous and wonderful blessing. Every time you feel a pang that your child is growing more independent and leaving you behind, instead say a little prayer of thanks that this can be so. You would never in a million years take that away from your child, just so you could permanently have a baby. Rejoice that one day your child will stand strong, and free as a mature person."

I never would say that, of course. I don't want to make anyone actually feel bad, just cause they enjoy their little one. But I can tell you that I have a permanent baby. He is super cuddly. He babbles with happy sounds and coos at me. He has tiny little feet and tiny little hands. He is just absolutely heartbreakingly cute, with his little toothless grin. And I love him very much. But there are not words to describe the joy I would feel if my little baby could develop in some way. Even just a little.

So after you read this, if you have healthy children, go and give them a big hug. Take a good look at how amazing it is that one day they will not need you. They will be self-sufficient. Strong and able. But they will still love you. Change might make you sad, as you look ahead. But think how happy these changes will also make you, something you might take for granted, unless you think about what it would be like if it was no longer possible for your child.

2 comments:

  1. So true. No hurt feelings here...I completely understand why you could feel that way. I can not even imagine (well...I can imagine..but that is so not how it really feels I am sure) what it feels like to have a sick child.
    So sorry to hear about your dad...I hope they get this under control soon.
    kd

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  2. Bless you And Steve as you walk this out.
    Cyber {{{{{{{{{HUGGS}}}}}}}
    Iris

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