The one where I get all weird and say God a lot more than I ever do.Posted on January 10th, 2008 @ 2:47 pm
I’m not a particularly religious person, not by any stretch of the imagination. I’m not quite sure what I believe – if anything, I strive to be a good person.
However, I’m always amazed at the deep religious faith that many (some days, seems like most) of the CHD community hold. In a way, I’m a little jealous that I don’t hold a similar faith – there seems to be great comfort in putting the concerns and fears of having a heart child in the hands of something larger. I just can’t – it doesn’t come naturally to me, and in the end, even trying feels really forced.
That said, there is a lot about the heart community (and illness in general, I guess) and religion that really, really bothers me. The biggest issue I have is the idea that a child perseveres because of the great number of prayers put forth for that child. Do I believe that Sammy did well because of the energy and reiki people sent? Yes – I believe that it surrounded him in a healing energy that helped carry him through. But to say that God heard those prayers and therefore granted our wishes? Not so sure – mostly because 1) not sure about the whole God thing, and 2) it feels like a HUGE slap in the face of the families whose children have not made it. It’s like saying, “I’m sorry – you didn’t pray hard enough or God just didn’t think your prayers were as worthy as someone else’s, so you’re out of luck.” WTF? I understand that that last section might fall under the “God has a larger plan for all of us” belief… but still, it really angers me. I think prayer and energy are an added bonus, but not the basis for whether or not our children make it. You prayed the hardest, so you get the biggest reward? How does THAT work?
I just stumbled on a mom whose child was diagnosed in-utero, but outgrew all of the complications by birth. Yay for them! (Do I feel pangs of jealousy at the same time? Hell yeah. But my son is so totally awesome, which more than makes up for it.) BUT, she places all of it in the hands of God. It was all God’s doing. I just don’t get it – because she read these certain scriptures over and over, and put her entire faith in his hands, her daughter got to be born without a CHD? She got a “miracle” (though I think ALL our kids are miracles) because she went to church several days a week, and the rest of us suck so bad, we didn’t say the right scriptures or believe the right things, so our kids’ hearts didn’t fix themselves before birth?
How does THAT work with someone who considers them to be of strong faith?
There are just so many layers and missing pieces and twists in the logic that I have a hard time organizing it in written word. What I guess it boils down to is this: how can one believe that prayer saves a child and then say it was in “God’s plan” when a child doesn’t make it? How can one say that God hears our wishes and then reconcile the loss of a child with that? I guess I just don’t get how when things go well, it’s all because God willed it that way because of prayer and reading and reciting scripture, and when they don’t – well, it just feels like by some twisted logic, those involved didn’t try hard enough.
I hope I didn’t offend anyone – I know some of my favorite and most beloved heart moms hold their faith very dear, and I know some of my favorite and most beloved heart moms are also moms of angels. I just wish I understood this whole faith thing a bit more, I guess. Shari? Faith? Terri? Anyone? I’d love to hear what you all have to say.
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Please send reinforcements – and more cookies.Posted on January 4th, 2008 @ 3:05 pm
This morning was toddler HELL.
Now that Sammy can pretty much tell us anything – and usually in clear sentences started with “I” and in some real insistent tone – he’s getting pretty demanding. Actually, pretty demanding isn’t quite right – screaming at the top of his lungs over and over until he gets what he wants? That’s a bit more like it.
Su & Reilly brought this tin of awesome chocolate covered heavenly cookies that I REALLY need to stop eating. Sammy’s obsessed with walking around with one white chocolate cookie and one dark chocolate. He doesn’t want to eat them (like mama does), he just wants to carry them around. And the concept of not bringing cookies to bed? Did NOT go over well. There were real tears involved. TEARS! Over cookies!
I mean, I may have cried over cookies, but there was usually at least some serious PMS involved.
(And yes, Sara, I just cut and paste my email to you.)
Keep in mind, we weren’t allowed to let Sammy cry much when he was younger as it was too much strain on his heart. And really, he never asked for much, mostly because he couldn’t, so there wasn’t much opportunity to tell him no. And he very, very rarely cried, so this is all very new to us.
Now? 3:30 in the morning demands to “GO DOWNSTAIRS! WATCH TV! MAMA! DADA! I WANT TO GO DOWNSTAIRS!”?
Perfect opportunity to practice our “no”, right?
And you know what he did? HE SCREAMED FOR AN ENTIRE HOUR. At 4 in the morning. Jay and I stood by our guns – it’s not time to play. It’s not time to watch TV. It is time to sleep. We said no, and no amount of screaming will get you what you want. We sounded like we had read the right books and knew what we were doing. If we cave now, what message are we sending?
Yeeeeeeeeeeeah. Right.
There’s crying it out and then there’s the full-on hysterics he brought out this morning. And after an hour of listening and starting to get terrified that it was going to cause him to start skipping heartbeats and/or have a stroke (and out of sheer exhaustion and desperation for more than 4 hours of sleep), I brought him into our room and turned on Dora. Perhaps the wrong thing to do, but I didn’t know what else to do. (Suggestions?) He showed no signs of stopping and I couldn’t take it anymore, and really – he was so upset he was gasping and we were certain he was going to make himself throw up. Going into his room to calm him down only made things worse, and what kind of message would I be sending to him if I let him work himself into that state and ignored him?
Sammy, 1. Mamadada, 0.
Ugh. I’m not ready for this.
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Hives and yippersPosted on January 2nd, 2008 @ 4:20 pm
A bunch of different posts brewing, all about the holidays and the upcoming cath and all sorts of things, but right now a more pressing concern:
Sammy is covered in hives.
It started yesterday and our pediatrician (over the phone) told us that it’s pretty common for toddlers to have hives as a virus works its way out of their systems. Sammy had a miserable stomach thing on Saturday, so the consensus is that the hives (that are ALL over and disappear and reappear elsewhere) are just that bug kicking around his body.
NOT pretty. And since I haven’t yet brought him into the office (what, with all the crap flying around?), I’m a tad on the paranoid side, convinced he’s caught some strange bacteria, terrified that it’s something we’re not catching in time and is going to get to his heart all because the practical side of me says, He’s acting fine. He’s playing and eating. A little clingier than usual, but they’re not itchy and they’re just what the pediatrician said they would be. But the impractical heart mom in me?
NOT pretty.
So, parents of toddlers and once-toddlers, what’s your experience with this? Has your kid ever burst into hives after some sort of illness?
On a cuter, more pleasant note, Sammy got a pair of Acorn slippers that he is OBSESSED with. He slept with them on last night, and this morning when I was changing him, he screamed when one came off – “MY YIPPER! MY YIPPER!” God forbid one slips off during the day – you’d think the world was ending. “MY YIPPER FELL OFF MY FOOOOOT! Mamamamama! Put back ON! My YIPPER! Put.Back.ON!”
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