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, November 23, 2010

Blue Christmas

I didn't really know what else to call this blog, though I think it's not a strictly accurate name.

It's just that I'm feeling some ambivalence towards Christmas this year. Not about the meaning of Christmas. Not about the message behind it the celebration. Just about the celebrating part of it.

I've been listening to Christmas music, which isn't hard for me because I LOVE the music. I've been known to listen to it in the middle of summer, yessir! I've been decorating the house, and that one has been strangely difficult for me, because I usually love to make my home have that "Christmas-y" look. All glowing and warm and joyous.

But this year it seems like a lot of work. And I'm not feeling as glowing, warm and joyous about it all. Christmas seems a bit hard this year.

It might be because I believe this will likely be Joel's last Christmas with us. I have a hard time imagining him make it for another full year, though it's possible. And surely I know that next year, there will be LESS left of Joel. Just like this year there is less of him then last year. And that all feels pretty sad.

I mean, it also makes this Christmas pretty special. Every time we do something, we'll be thinking this might be the last time we do it with Joel here. So it makes it all very, very precious. But sad too. Bittersweet.

And too, while every year there is a bit less of Joel, it feels like there is less FOR him too. Buying gifts for Joel always sort of bums me out. At least, it has since his first b-day when I bought him this amazing floor mat, but then he went downhill right after that, and barely enjoyed it at all. For Christmas last year I searched hard to find him something for his stocking. I was relieved, satisfied, maybe even delighted, to find him a chew toy that vibrated, a little massage tool because he was enjoying massages, and a tooth brush set with gum massager included.

This year, I got nothing. I mean, I bought him a couple of pairs of pj's. Not really "normal" two year old fare. Sure, I know, pj's are a great gift. If you think that idea can make me feel better - guess again. And family and friends ask what to get him. What do I say? Clothes. Yup. Clothes. Pretty imaginative stuff, huh?

Here's a little note of joy for my friend, Caroline. I'm not making this up. When I let Joel feel Ross's little Hedgie, he did smile. And I've not really seen much reaction to tactile stuff from him. But there was something about Hedgie that made him smile!

I just don't have it in me anymore, though, to try and buy any tactile stuff. It's so disappointing, because so often Joel just really isn't that interested in playing. If he is playful, he's more interested in getting kisses and zerberts on the palms of his hands, and talking and such. Which, I'm not knocking as it's own sort of gift. But you can't wrap it and put it under the tree with the rest of the gifts and it just makes me sad, is all.

If this is Joel's last Christmas, I just wish I could give him one that was equal in excitement and happiness to what his older brother will get.

I hope that doesn't make you feel too sad or too bad. I'm still looking forward to our family Christmas. And I'm SUPER grateful to have Joel here for another one. At least, I hope he'll be here. Don't get me started on how THAT feels, knowing that at any time that could change, and Joel wouldn't even be here.

It's just that I'm feeling happy, excited, and blue. All at the same time.

3 comments:

  1. That's how I've felt about Christmas for the 8 years we've had Ben, although I must say it's gotten a little easier. So much of Christmas and explaining is VISUAL and it always hurts that Ben can't see those things and be excited. I'm hoping Ben's make-a-wish hottub arrives soon so he can enjoy that as our local pool (his favorite place on earth) closes for a month of maintenance over Xmas this year--extra bummer)
    Anyway--have you put in for a m-a-w for Joel? Maybe that would be something to get excited about that's special for Joel?

    H

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  2. Karen: I completely understand how you could have all these feelings. It is the same with any terminally ill person who may be in your life....extra hard if that person is a child. The fact that you think so hard about it and try to find something Joel will like is enough...because if you end up just snuggling, kissing and blowing raspberries in his hands on Christmas Day and he never knows there is a single present under that tree....that is alright with him...it is those things that make HIS world exciting and fun and that is all that matters for HIM. Enjoy your family holiday. get lots of snuggles and photos and create some great memories...you won't regret that...even if there is a little sadness knowing it will not always be the 4 of you. Celebrate while it is the 4 of you.
    Hugs,
    Karaleen

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  3. I love what Karaleen wrote here. That is beautiful. Christmas can be a very hard time of year. Today is a one of those sad days for me that comes around every once in a while now. December is when our daughter often got sick and it's also when she passed away. It took me a long time to get out of Scrooge mode after she died and I was doing so well, but it came back this year. I am feeling overwhelmed by the sadness that is around me and know that it is up to me to walk alongside many close friends who are having a really tough time and it doesn't look like it's going to get any better any time soon. Instead of counting my blessings today, I made a list of those people for whom Christmas will be more difficult this year and your name made my list. I cried over that list and I prayed for God to grant you peace as you go through these next few weeks.

    I love reading your blog and can relate to how you are feeling so many times....the frustration, the waiting, the guilt. Just do your best to enjoy your son...and acknowledge those times when that is difficult. I'll pray for some more happy days for Joel because those bright moments will be the ones to remember.

    Susan.

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