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..


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, July 30, 2010

Birthday Blues

Last night I had a little cry. It wasn't exactly Joel's upcoming birthday that did it, it is just the thoughts and feelings that his birthday brings out.

So last night I was thinking about Joel's birth, and about those first months when we thought he was a "normal" healthy child. I was remembering how I tried to put him in our Jolly Jumper at just over 3 months, like his brother, Caeden. His head was still a bit wobbly, but he seemed close to holding it up ok. I was remembering that I was thinking at the time "Hmm. It's pretty young for the Jolly Jumper, and he's not going to be exactly like his brother, so we'll just try again in a few weeks. He's almost there."

This memory dissolved me into tears. It is very painful to think of the time when I thought Joel's body was "perfect." And remembering how he was almost holding his head up, and how now he could never do what he did then, well, that is pretty hard too.

Birthdays. Yes, it is a time for celebration, for Joel has hit two years and he is still a happy little guy. Each happy day is really a cause for celebration, because each one could be the last one. I don't take that for granted.

But Joel's birthday really leaves me with pretty ambiguous feelings. And many of them are not that great.

I could go all out. Put up the streamers, get the little cartoon plates, invite "friends" for him. I'm not knocking this route. It's probably a good one.

I just can't do it myself. It feels too much like pretending. I mean, I know that Joel could really care less about all that. He's happy to get some birthday cake and ice cream to taste. And to get his usually cuddles and loving. That is all he really needs or wants.

And presents are hard. Last year I convinced Steve to spend $80 dollars on this fancy floor mat that played really nice music with light up flowers and dangly toys. I don't regret the purchase, and Joel has used it. But not like I'd hoped. He's gotten about $10 dollars of value out of it. Maybe he'll start to enjoy it or play with it again, I never know.

But when, two weeks after we gave it to him, he was just no longer interested in playing, it was so sad. He wasn't interested in playing for several months, in fact. So now when I look at the play mat, I have mixed feelings about it. I don't enjoy trying to buy Joel toys anymore. Too dangerous. Too many fragile hopes that are dashed. And he just doesn't seem very interested.

So Joel gets clothes for gifts. Which makes me feel sad too. Presents for Joel are not too much fun for me.

And birthdays are such a remembering time. I think over the last year. I think about the future. Mostly they make me remember Joel's day of birth and all the happy feelings that went with it. Joel's birthday is just hard.

Or, at least, the days leading up to his birthday are hard. By the time I get to his birthday, I might be "done" remembering. Last year the day itself was not as bad as the lead up to it.

So on Joel's birthday I have created a tradition. Joel gets a cake. And I get a cake too. A cheesecake. One for him. One for me. Just a little something to help me feel a bit better about such an ambiguous day. Funny, isn't it? At my age, it should be MY birthday that raises ambiguous feelings, not my two year olds.

So if you come by on Monday, you'll get a choice. Regular cake or cheesecake. But not TOO much of the cheesecake. Leave LOTS for me!

1 comment:

  1. Oh Karen im sorry! I to think about those first oh say 6 months when I thought I had a perfectly healthy child. I miss that mind set. I know unfortunately our kids present are no fun and infact we usually get nothing of use for them as presents. I would love to go to the store and buy the most awesome toy there UGH! But I look at Jordans birthday as celebrating another year b/c we dont know how long he will be here with us. It makes me feel good to say I tried. As much as I would love to "cure" him I am thankful for him. He has made me look at life differenlty and taught me soo much.

    Happy 2nd Birthday Joel!!!!!!!!

    Sarah D