Friday, July 9, 2010

A Wee Bit Gloomy

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There was a time that I actively sorted through my iPod for songs that would be appropriate at Simon's funeral. A time when I would think about what I would say and who would be there and where it would be held.  I did it because there was a real possiblity it would need to happen.

I haven't thought about much of that for a long time, but yesterday, on my way to work , this song came up on my iPod  (you have to listen to it for full effect) and I sobbed for about 3 miles, thinking about how appropriate it would be for his funeral.

I don't know exactly why I'm there right now. The 2 year anniversary of Simon getting sick is coming up (August 1). A Mom on our listserv wrote in passing that her child got sick at 4 months old (Simon's age when he got sick), seemed stable on meds for a few years and then had to have a heart transplant at 3 1/2 years old. A father on our listserv who just lost his son recently just posted about visiting his grave on Memorial Day.

It almost doesn't matter why it's up because it's actually always there, right there, in the background. Death seems further away these days, but she's still there.

Everything is fine at our house.  Simon seems great (really tired, but so are we, so maybe it's a mild bug). 

Sometimes this piece comes sneaking in when everything is quiet.  I don't try to fight it, I just try to ride the hard feelings and it often ends up feeling cathartic.  When I told Laura about it last night she just said, "it's a lot closer for us.  We've been really, really close to death for a while now. We just live with it in a way other people don't."  I guess my illusion about permanence and immortality and bad things never happening has been washed away by the waves of terror we have lived through.  It's actually not as terrible as it sounds.  It's just reality. 

That said, I *do* find myself going to catastrophic thinking much more easily.  Yesterday I was convinced Laura had died in a car crash and Simon was in a hospital somewhere when I couldn't get in touch with her until 4:30 p.m..  I sat in a meeting trying to not hyperventialte and panic and think reasonably as the clock kept ticking and I still hadn't gotten a response to my calls and text messages.

I've had crazy thoughts like that before Simon got sick, but it usually took a lot longer to get there and they were a lot less realistic.  I've had to rewrite my whole life in 5 minutes a few times before (a few dicey moment's in Simon's birth, Laura's head injury, Simon's diagnosis, deciding against transplant) and it's almost second nature now.  It's not a very useful habit, however.

 I'm gonna work on that.

Looking forward to a beautiful weekend and hopefully lots of sweet cuddle time with all my creatures.

P.S. We're trying to rule out Cardiomyopathy as the cause for some distressing symptoms our dog is having.  Wish I were kidding.  Hoping it's a thyroid issue.  We really can't have creatures of 2 different species on the same meds in the same house. That would just be laughable.

Tuesday, July 6, 2010


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Last night something happened that rendered me completely speechless.  For those of you that know me (Jaime) at all, you know that that's sayin' something.

A few months ago, I wrote a post that included a letter I wrote to a local family about why their "Yes on Prop 8" (anti-gay marriage initiative) sticker was so hurtful.

I got a response. 

Careful, you'll catch flies with that open mouth.

The response wasn't from the family I sent it to. It was from the mother of one of the teens at Camp Taylor, the cardiac camp we went to with Simon. She sent me an email last night. I'll let her words speak for themselves:


You may not remember me but I was a counselor at Family Camp last weekend. My daughter is a mentor [an older kid with heart disease who is a Camp Taylor veteran and essentially a counselor] . She got me hooked to your blog about your family. I wanted to write to you about your blog titled "A Letter to my local homophobe"
 Your letter was written to me. Now I don't have the mini van or Catholic sticker but I am a Christian who had the Yes Prop 8 sign in my yard. I believe some people are born gay and I never had a problem with gay families adopting children. For some reason I didn't want you to have the legal rights to marriage. I always felt that marriage was an agreement between a husband, wife and God. After meeting you two and reading your blogs I'm so sorry for my stupidity. I saw the love you and Laura shared with each other and Simon. As a fellow heart mother I know whats it's like to have a child fighting for their life. Why would I or should I deny you or Simon the same rights as me.

So please accept my apology for creating fear to others and thank you for your postings. Sometimes as Christians we think we deserve more then others. You deserve everything that I have. Please keep up blogging.

Oh, tell Laura I'm voting for her as the new Camp Fire Director. Not that we have one but we should. She was awesome leading songs at camp.

God Bless your family
When the tears cleared, I wrote her a VERY heartfelt thank you. 

Okay, on a lighter note...
Simon can now say about a zillion words, including "bumblebee" and can ride unicorns.
Video of Simon singing "Bringing Home a Baby Bumblebee":
Riding the mythical unicorn at Mamaw and Grandpa Eddie's house