Any orders placed through April 30 will be shipped May 1. Any orders placed after that will wait to be shipped until after we get back from Teddy’s May 9 transplant. (and I don’t know when that will be.) Thanks!
No words
I keep logging in here to make a post, but then I just don’t have any words. This blog has always been a reflection of what’s happening in my life, what’s going on, what I’m thinking about… and right now, everything is pretty much about Teddy (which is handled over at Teddy Bear’s Journey) or homeschooling (which also has its own blog). That’s about all I’m thinking about these days.
And anything else, such as the recent election, I just can’t get my thoughts organized enough to come up with anything really coherent. I think too, too many people have deluded themselves about this new healthcare thing, though. It is extremely scary to those of us with small children with serious lifelong health problems.
Teddy and I have been in the hospital together a total of 102 days today. Not consecutive, but total over his life. 102. This trip marks the first time since his diagnosis that I’ve been really afraid of losing him. Not short-term – he’s not in mortal danger this week or anything – but more long-term.
I can’t post about crafting. I’ve done some knitting, but nothing remarkable. I can’t post about parenting – I haven’t done any recently. I’ve been in the hospital with Teddy. I can’t post about finding awesome Christmas presents at the thrift store. Because I’ve been here. I can’t post about my plans for pretty much anything because… I’ve been here.
So, that’s my life. I’ve been here.
long time…
I’m doing most of my blogging over at Teddy’s blog these days. Honestly, this blog feels like it belongs to a different person who had time and energy to discuss news, books, and opinions.
Books: Sooo Behind
I’ve even forgotten some of what I’ve read.
Contact
Much better than the movie. I might start watching movies first. Then I’m not disappointed in the movie, and the book is still better.
Ayn Rand’s Anthem, Fountainhead, and Atlas Shrugged
My favorite is The Fountainhead. It seems like it’s a loooong journey to the payoff, but the payoff is sooo worth it.
Can’t remember what else…
Okoboji
We had a good time at Okoboji this year. I feel like I missed out on a lot of stuff because I was pumping, but the quiet time to read or watch TV wasn’t bad, either.
Wally rode the roller coaster all by himself.
Arnold’s Park wore them all out.
Geocaching.
Found a skeleton
Mom Enough
I’ve been kind of ignoring the Time magazine thing. OK, not really, but kind of. I think the picture is doing what it is intended to do – shock, generate controversy, sell magazines. The wording on the cover is ridiculous – are you Mom enough? How AP Drives women to extremes? What?
But, seriously, whatever, Time. I’m over it. I don’t really give a flying rat’s hiney what Time, my neighbor, or the country thinks about parenting decisions that we make for our family. When you are parenting my children, then you may voice your opinion on how they are parented.
Besides just the Time article (which I haven’t read), there have been a TON of blog posts about the issue. (mostly expressing shock and horror and scolding Time, but SERIOUSLY, people, the best way to scold Time would have been to not mention it at all, thus depriving them of the publicity and increased sales they were obviously going for.)
Then my husband sent me this article. It starts off good. Avoid resentment. If you’re doing what works for you, then let the opinions of others be damned! Yes! I’m on board! Then it takes a bizarre turn.
Here’s a handy rule for avoiding resentment: If you hate doing something, you absolutely must not do it.
This means that if you despise, in your heart of hearts, cooking or singing lullabies or breastfeeding or playing Frisbee, you are forbidden to even think of doing those things. As much as your children or your spouse or your weekly news magazine harangue you, stand your ground. If you hate it, skip it.
If you loathe watching Pixar movies or sitting criss-cross-applesauce or driving to field hockey practice or making homemade Halloween costumes or drilling SAT vocabulary or reading “Barnyard Dance” aloud—you must avoid these things. Dream up a workaround. Get your mom, dad, neighbor, wet nurse, spouse or babysitter to do them. Outsourcing is a choice you can feel good about.
What? So if you hate something, just don’t do it?
As I posted on Facebook, I recall a Dr Laura phone call from a dad calling about his 2 year old son, who wanted to do nothing besides play at the train table with his daddy. He didn’t want to play catch (which is what his dad wanted), he didn’t want to play puzzles. He wanted to play trains. His daddy hated trains. He didn’t want to play trains. And Dr. Laura reamed him new one. And she was RIGHT. For the love of all things holy, that child was TWO. Two, and he wanted to play trains with his daddy.
I don’t give a crap if you hate trains. Your child will be two for exactly 365 days. He’ll want to play trains with you for probably fewer than 2 years total out of his life, and even if you played trains for 2 hours every single day for 2 years, that’s only 730 hours out of your life. That’s about 30 days. 30 days out of that dad’s probably 35 years of life. He can’t spare that much time to do something he doesn’t like – and with a smile on his face and a happy demeanor – because it makes his son, who he loves, so happy? How freaking selfish can you get?
If you resent doing things you don’t like to make your children happy, then don’t have them.
Parenting is not about YOU. Once you have kids, it stops being all about YOU. If you want life to be all about you, then don’t have kids. (or adult relationships, because guess what? Getting along in ANY relationship involves some level of doing things you hate because they make someone else happy.)
Better advice might be “if it works, stick with it. If it’s not working, make a change.” But resentment is a choice – you can choose to resent that your children – particularly babies – have needs, or you can choose to accept that children have needs and that it’s YOUR job to meet those needs.
But, you know, I see in this article the very dichotomy that exists between AP and not AP. At the heart of AP, and at the heart of any Christian relationship, is the notion of having a servant’s heart. AP is, at its root, having a servant’s heart towards your children.
whining a bit
I usually put stuff having to do with Teddy over on his own blog, but this is really more about me.
Please note, those of you reading this. I am NOT in any way trying to make you feel bad for complaining about the annoying things in life. I’m not begrudging anyone their troubles, nor am I saying that people don’t have a right to feel the way they do. I don’t expect anybody to change, and I’m not talking about anyone who reads this blog. (because I know all three of you, lol.) Everyone can still feel free to whine about stupid crap to me or in my presence. I know I still whine about stupid crap, myself.
I’m in a continual search for the answer to this question: How many babies (and how many kids under 18) have renal failure in the US? Harder to find that than you’d think. I can find how many NEW cases per year, but how many total… it’s harder. (there’s even an article about this here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2064944/)
In this search yesterday, I found the US Renal Data website, and an article from the New England Journal of Medicine. There’s more stuff here: http://teddybearsjourney.wordpress.com/2012/03/10/geeking-out-on-kidney-facts/ but the real gems are:
For patients beginning ESRD therapy in 2000–2004, the overall probability of surviving five years was 0.88. By age, this ranges from a low of 0.78 among patients age 0–4 to 0.92 for ages 10–14.
The long-term survival rate among children requiring renal-replacement therapy was 79 percent at 10 years and 66 percent at 20 years. …Risk factors for death were a young age at the time renal-replacement therapy was initiated (especially for children under 1 year of age, among whom the risk was four times as high as for children 15 to 19 years of age) and treatment with dialysis (which was associated with a risk more than four times as high as for renal transplantation).
CKD in children is a devastating illness, and the mortality rate for children with ESRD receiving dialysis therapy is between 30 and 150 times that of the general pediatric population [6, 7]. In fact, the expected remaining lifetime for a child 0–14 years of age and on dialysis is only 20 years
Go read those quotes again.
Now. Are you having such a bad day?
And I don’t mean to sound like that. I don’t mean to be being a total bitch about this. Everyone has bad days and everyone hits the end of their rope, even if it’s just ridiculous stupid everyday stuff. When we’re home from the hospital and things are going well, I have those days, too. I have those days where perfectly NORMAL stuff makes me frustrated. It is NOT as though I now go through life completely unruffled by life’s little bumps in the road.
But my sympathy point has completely shifted, and particularly when I’m on day 13 in the hospital and I miss my kids and my husband and I miss sleeping on a bed that’s not plastic and that doesn’t angle towards the floor and I miss sunlight and fresh air and not having strangers all up in my business and dammit I just don’t want to be here anymore, and I know that, even with treatment, there’s a hefty chance my kid won’t see Kindergarten, let alone high school and let’s not even get so hopeful as to think ahead to marriage and jobs and kids, and the almost paralyzing fear I experience every time I think that there’s a chance that Randy might not be a good match for an organ for Teddy and then… and then.. what, I don’t even know, we have to start begging friends and family for a kidney, or go on the list and wait for God knows how long… I hope it becomes apparent why seeing things on FB about “oh, my life is so terrible” and “everything’s out of control” and knowing that it’s about kids having colds, or the washing machine on the fritz, or whatever… it kind of makes me want to reach through the computer and choke the living crap out of people.
I’m sorry, because I know that makes me seem small and petty.
I’m at the same time still able to be happy for these people – my friends – that they get to experience those types of terrible days.
And on top of all that, I know people online who have it worse. Two of the kids in the Renal Warriors group on Facebook have coded in the past month. So even though things can be tough with Teddy, you know, he’s always managed to keep his heart beating. And so on our tough days, I think about them and how much I still have to be thankful for.
