In a timely manner, Santa, as the doctors dictate and not when some know-nothing insurance company with rigid “rules” that don’t take into account the need for little girls to not be feeling like hell all of the time with itchy skin and low energy. Seriously, Santa. Do something.
The “Internets People” (Quinn’s term) sent (so many!) earrings and necklaces and treats and stickers and goodies and pens and note pads boxes and jewelry holders and books and more…you would not believe her eyes and her excitement! Hence the reason some of the boxes of jewels and goodies got separated from their notes and so, I have no idea who gave what…but I will tell you this, you Internets People!
You are amazingly generous and I’m humbled by your willingness to give a little sunshine to a sweet little girl. My girl.
via Bejeweled Patient & Box O’ Love : Kidneys and Eyes.
Julia is anxious to know which of you sent what (because the box got jumbled) so please go on over and let her know (if you like)! Also, there are some that have come since (kangaroos, Ky’s amazing art, Roni) and I’m sending those next week.
And a latent consequence of your good deeds is that Madison now really really wants her ears pierced because those earrings? They were GORGEOUS! And Madison thinks it must might be worth the pain!!
Meet Quinn.
Isn’t she about the cutest thing ever? Quinn and her big brother Gage have polycystic kidney disease. What this means for Quinn lately is that she’s really really tired and itchy and she’s getting new injections, (which don’t tickle, let me tell you) and she’s about to have a kidney transplant. Quinn’s big brother had a kidney transplant a little over a year ago and Quinn watched him go through it. She’s pretty nervous about the scar.
It’s the lousy nature of PKD that having a kidney transplant –while an amazing lifesaving gift — also creates its own set of challenges. And — as is also true for her brother — it won’t be her last transplant since she will need more in the future.
But Quinn, as you can see in the picture above, is a child blessed with a sunny disposition. She is sweet and silly and generous (she let her mom send all her old tutus to Madison!) and she is patient when her brother is showered with gifts from the Make-A-Wish Foundation. (I’m pretty sure she inherited her optimism and generosity from her mom.)
Quinn wants one thing before her kidney transplant; she wants to get her ears pierced. Here is what her mom says about granting these kinds of requests (read the whole post here):
One night before bed I confessed to Julian I had realized that if Gage died from the transplant complications I wanted him to have experienced a dog. He declared “Game Over” and the next weekend we were dog shopping at the Atlanta Humane Society. We had a miss with one dog who bit Quinn, and then we ended up with the best dog ever – 6 year old Lucy. We love her dearly, but she is with the family because of my fear of my child dying. Without him knowing the reason why (duh) I was granting him that one wish. It was worth it at the time and still today.
Lately, Quinn has been talking about wanting to get her ears pierced.
So, yeah. We are so letting her get them done. I can’t let her go into life-saving surgery without some jewelry.
Here’s what I want to do. I want to send Quinn a whole mess of earrings (and maybe stickers or cards or paper dolls or other stuff easy to fit into an envelope) from lots of folks. Originally I thought I’d send ‘em all at once along with something I’ve put aside for each of the kids but now I’m thinking it might be nice to send ‘em as I get ‘em because getting mail when you’re a kid is loads of fun. If you’d like to send Quinn some earrings, comment here or contact me and I’ll send you my address. I’ll push the gifts right along to Quinn.
Look at that bright and shiny girl up there! Wouldn’t some nifty earrings go great with her sparkling hazel eyes?
Julia and I were talking homeschooling the other day (a big discussion/gentle debate) and she said, I like to think gently, that maybe I liked being the odd parent out and this had something to do with our homeschooling choice. You know, that much of my identity comes from going against the grain.
I’ve been thinking on this. It’s a charge I’ve had leveled at me before especially when I was a disgruntled teen with bad punk rock hair and questionable taste in clothes. It’s true that when I was a teenager that I reveled in my weirdness but that’s just it — I didn’t like to be weird; I was weird. And when I was a teen and grappling with my identity, I wanted to be very in people’s faces about it as teens will be.
So see, it’s not that my identity is wrapped up in being weird like a status symbol; it’s that I am who I am and I’ve learned to be proud of it as opposed to defensive and worried about it. Am I proud of being a homeschooler? Sure. I’m proud that we’re living out our values even though homeschooling has added to our challenges as a family (financially for the most part) and I don’t need that celebrated although it would be nice to have it accepted instead of questioned.
Back to being weird and how it relates to our homeschooling choices. I was an odd kid and pretty early on I figured it out as odd kids will do. It seemed like I usually wanted to do things differently than my friends or had interests that they didn’t share. I’m fortunate that I wasn’t the kind of kid who got harassed much and I’m sure part of this is that my mom (and I think my dad) like me an awful lot and told me so. What made me weird, I learned early on, was also what made me special so I never wanted to pretend to be something I wasn’t.
I think when it comes to intrinsic weirdness having confidence is what saves you from getting harassed. Also as introverted as I am (and this introversion certainly contributed both to my weirdness and my school misery), I do like people and my social skills were always good. You know, “plays well with others” and stuff like that. I’ve always had close knit friends and generally get along with people and my unhappiness with the social world at school had to do with the way I saw it and experienced it and not with how I was treated.
There are two bullies that stand-out in memory — one being some random kid in Chicago who used to follow me home from school and wash my face in the snow. I don’t know how it started or how it ended but I remember the feeling of trying to get across the wide open field between the school and our house during the blizzard of ‘78. The snow was too deep for me to get across quickly, so I’d struggle huffing and puffing and praying he didn’t catch me. The other bully was in middle school, one Eric Bielke who was a big, dumb, mean guy and who had it in for me for reasons I still don’t understand. He’d wait for the Home Ec teacher to leave and then threaten to strangle me. But mostly I had my friends and things were fine as long as I was comfortable with feeling awkward, which I learned to be. Which is to say, again, that my misery wasn’t social misery.
Some weird kids, they have charisma and can wear their weirdness to the top of the pack (my first boyfriend, Joaquin, was one of these). But the rest of us have to make some choices:
- Pretend to be normal as best you can and hope it sticks (it never does).
- Be weird and say screw ‘em.
When I was a teenager and first getting my feminism on, I used to have a test for movies and books. Where am I? Where am I in this story? Who could I get to be? Asking myself this helped me identify why reading some books (Philip Roth, Jerzy Kosinski) left me feeling so … empty/scared/lonely/depressed/angry. Because very often the who I could be (the woman or women in the book) were empty stereotypes. Those stereotypes left me feeling worse than if I hadn’t been there at all. In other words, having women’s roles limited by sexist stereotyping felt worse to me than reading a book where women didn’t even appear. Because I could read a book, say, The Chocolate War and know that the lack of women was about the focus of the book and not about the unimportance of me and women like me in all of our technicolor detail.
It’s not that I’m arguing for a complete lack of representation but I am saying that token representation can feel just as bad if not worse. Because I would read those books and think, “Is this all I am to men? Is this all they see of me? Is all the scope I’m allowed to be?”
I sometimes still use this tool to point sexism out to, say, Brett who doesn’t have a lifetime of evaluating media under his belt. For me, understanding the limited range of my imaginary role-models helped me not to take that subtext on as my own. Seeing that my empty feelings after one of those books or movies had to do with the limited imagination of the artist let me reject it.
Let me say right off that as a writer, I didn’t like The Time Traveler’s Wife. I thought it was a lumpy story full of unnecessary detail that detracted from the narrative. I felt that the complex structure of the plot didn’t make up for the unfinished main characters, stilted dialogue or self-indulgent trivialities. I wanted to like it but I didn’t. I felt about it the same way I felt about Mr. Holland’s Opus; I cried at the sad parts even while cursing the master manipulation at work. I knew I was being strung along but gave into my base emotions anyway.
Still, you can’t argue with numbers and the sales attest to the skill of the author. People loved this book. Writers whose opinions I admire loved this book. Readers who read with a discerning eye loved this book. Besides which, Becca has done a good job in reminding me always that to sit down and write a book is an endeavor worthy of admiration in and of itself. So there’s that.
Thing is, The Time Traveler’s Wife is also really racist and that I can’t forgive.
Let’s dip in, shall we? (after the cut)
