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!





Tuesday, February 15, 2011

Out of Home Anxiety

A while back I mentioned that our case worker had offered us some "out of home" respite. I talked about it in a blog called "Resentment."

And while I have been feeling anything but resentful lately, I had seriously considered the offer and decided to take her up on it. I decided to do that, so that Steve and Caeden and I could have a chance to go away if it came up, and especially in the summer so we might go camping.

So we've been working on it. Figuring out the hours and how it might work. I wanted less hours and more flexibility, so that we could just do some day trips if we wanted and take Joel home at night. The very nice lady who we will meet soon, was very flexible and happy to do just 8 or 10 hour shifts, and was fine with the information that we wouldn't likely be giving her many hours.

Now that it comes down to it, though, I am wondering if she'll get ANY hours. I'm a pretty laid back parent, even with my high needs and fragile-health little boy. It's not that I think this lady will make a mistake, or hurt Joel, or neglect him. I'm really sure that he'll be changed and fed and made very comfortable.

But this is a lot harder than I thought. I don't know what Joel will think about being left somewhere, especially overnight. I know she'll be nice and be kind, but will she be able to hold him and cuddle him like I do? Will she have/make time to do this three times a day?

And then there is the thought of him getting sick or dying while he is over there and we are away somewhere. That part is pretty freaky.

Somehow, I feel like I'm letting Joel down. No, really, this time is isn't guilt. I don't feel guilty. I don't know how to explain this feeling, exactly, but it's not guilt. We love Joel. We love to be with him. We feel like there will never be enough time in the world for all the cuddles and kisses and loving and being together that we want. So how can I let any of it go and leave Joel with someone he doesn't know?

Maybe it's almost like I regret doing it already. Yeah, I think I was feeling some regret for something that hasn't even happened yet. And today, after I got off the phone with our case worker, I was almost in tears. I really could have sat down and cried at the thought.

It really doesn't seem worth it at all. I'll lose time with Joel. It will be MORE work to pack up everything and take Joel then just to stay home (a LOT more work). It will be so hard not to worry the whole time. And the truth is, I'll miss Joel.

One reason I'm still going through with it is for Caeden. Because I know how precious and special it would be for him to go camping with us. But I'm not looking forward to doing it. I'm really not. I hope my feelings change between now and then.

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