One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Thursday, April 06, 2006


The much anticipated Kite Day did not work out, despite the most beautiful sunshiny weather a little kite-flier could ask for. Annika was just feeling too tired, all day long, to work up enough enthusiasm to move herself off the sofa. I was disappointed: we had talked about it all weekend long, checked the weather report to choose the optimal day, discussed the kind of kite she would choose for the expedition. I know the outing was for her and Frankie, not me, but I couldn't help feeling a little angry that day. It's crazy to be angry at her, but sometimes I just want her to get up and get going and live life and be H.A.P.P.Y. Instead she sulked around the house all day, whining instead of conversing, and disagreeing with me at every turn. Frankie, too, was disappointed, but taking her to our backyard was enough to restore her good cheer, while Annika sat on the sofa, snuggled into a woven throw blanket and drinking chocolate soy milk while watching a DVD of Hello, Kitty! episodes from the 80s. Annika was finally lured outside by a visit from her neighbor friend, Sabrina. And then the two older girls (they may as well be pop star superheroes for the kind of adoring reaction they generate from my two) from across our backyard came over to turn it into a near party. But as the rest of the girls ran around happily, Annika ambled unsteadily at the fringes. Until, with no warning, she just toppled over. Frustrated and a bit sore, she headed back inside. Where her mood turned even darker, until we finally settled her into bed early. Contrary to most television specials on the subject, sick kids, particularly ones that have had issues all their lives, can be the most annoying creatures you have ever met. They have often been a bit over-indulged, and they frequently know how to pull the parent puppet strings with shocking mastery. They can get whiny and grumpy and generally exasperating. And you want to just shout, "Enough!" (And you sometimes do.) But in the back of your head, you know that usually the bad behavior springs from feeling lousy that day. The question becomes: how much slack do you cut a kid in the name of understanding? Obviously, you don't want to throw all your rules out the window, but you also don't want to make your kid feel like they don't have the right to complain or express their feelings. Sometimes, when I talk about it to other parents, it feels like the boundary should be simple. Something like, stick to the rules as usual, but be sure to make it clear that their feelings are warranted and that you are sorry they're not feeling well. As with everything else in parenting, though, it's always so much harder to put into practice. Annika greeted the next morning by telling me the first bold-faced lie of her life. Not the kinda sorta true, but not really, mumbled half-truths she's come up with before, but an all-out, embellished with lots of (false) details, 100% unmistakable Lie. So I took away all TV-watching privileges for the day. Now, one day may not seem like a lot to you normal parents out there, but TV is Annika's crack cocaine. And I was pretty sure that taking away the TV for one day was going to be about as much fun as going through detox with her, which, incidentally, I have done. Twice! (And they don't share the methadone with the parents, you know.) Surprisingly, though, the day was wonderful. We ran errands in the morning, and I let Annika and Frankie choose their own flowers (pansies, the big, fat, frilly ones with the eye in the center of the flowers) to plant around the house. In the afternoon, Annika went to preschool (she started this week and words cannot describe how thrilled she is to be back). When Frankie and I picked her up, she told me proudly that she had done "Kindergartner work" that day, and showed me the counting workbook page she had completed. Then we went home and planted flowers. True, she got tired after about 15 minutes and went inside to hang out with Jörg, but she was back out again 20 minutes later and played until bath time. She was asleep by 6:15. Patience, really, is what it takes. Sometimes a whole lot of patience. There are bad days, sometimes weeks and weeks of bad days one after another. But there are always very good days, too. And sometimes weeks and weeks of very good days. Framing skills are also very handy when you're creating the mental picture of your life. I've been focussing so much on the scary aspects of Annika's medical situation, mainly that she needs a transplant but isn't strong enough to undergo the surgery right now and meanwhile keeps bleeding. But the more pertinent fact is that Annika's surgeon is willing to retransplant her. Certainly he wouldn't choose to do that unless he thought that she had a shot at coming through the surgery and living many more years to come. So maybe those many more years will find Annika honing her whining skills to a sharp and annoying point. I'm sure at some point I'll finally muddle my way into a more effective approach for those moments when I find my teeth grinding together at the high-pitched keening sound of Annika protesting the unsatisfactory temperature of the water in her cup. This, in fact, was my very situation just a few days ago. I let out a theatrical sigh, loud enough to startle Annika into silence. Then I hunched my left shoulder up to the side of my neck, elbow cocked to bring left hand right up above my shoulder. Then I began making tiny sawing motions with my right hand, which was right up beside my left. "Do you know what this is, Annika?" Eyes wide and serious, she shook her head. "This," I say dramatically, "is the world's tiniest violin playing the world's saddest song." Jörg rolled his eyes at me, "I don't think she's quite old enough for sarcasm to be an effective communication tool, do you?" But Annika was not put off at all, looking, instead, rather intrigued. "How about we hear that very sad song, Mama?" And Frankie, bless her sweet and loving little heart, raised her arms for a hug, "Oh! Don't be sad, Mommy!"
April is National Donate Life month to promote organ, tissue, and blood donation, and recognize the positive impact donors have had on the lives of so many. Go to Donate Life for more information, and, if you live in Illinois, you can click here to join the on-line donor registry. The organization I volunteer for (Gift of Hope) also has a wonderful and informative website. Pass the links along, if you like, and feel free to pass along this photo of a beautiful (if occasionally grumptastic) little girl from her forever grateful parents:


Anonymous Becca - momofnataliebear said...

Ah, it's a fine line, indeed my friend. Natalie is testing those limits too.

Only she will pick at her wounds (as a way of getting back at us)when we repremand her for minor toddler misdeads. We think of you often.

Can you tell me how to get more involved with Gift of Hope?

4/06/2006 9:29 PM  
Blogger Rowan said...

Oh, Moreena. You inspire and amaze me. And not just in the lofty ways either. I laugh at your antics and feel more free to express myself as a human being to Kajsa -- as opposed to angelmartyrnursmama.

Thank you.

I, too, am interested in Gift of Hope. Obviously, I want to promote organ donation. Sometimes it is hard, though, to know how to get involved.

4/06/2006 9:54 PM  
Blogger Phantom Scribbler said...

I know I shouldn't laugh, but Annika requiring detox to get through a day without the crack cocaine of TV? I have been there and done that.

Just don't tell my kids that the Hello Kitty DVDs exist, ok?

4/06/2006 9:58 PM  
Anonymous peripateticpolarbear said...

Ah, yes, the grumpy, grumpy girl. I'm quite familiar with the animal, and believe I still have a scar from the grumpy girl that became an angry adolescent that threw a mug at a doctor and hit me. Isn't it great that she's so totally normal--and occassionaly ornery?I could read your posts all day. You inspire me--not just in the 'you're amazing and heroic and all that jazz' way, but because your writing is so lively and clear. Your girls will be so lucky to have this record of their lives when they get older.

4/06/2006 10:37 PM  
Blogger Moreena said...

This comment has been removed by a blog administrator.

4/06/2006 11:20 PM  
Blogger Moreena said...

Becca - I emailed you.

Rowan - *blush* I'm pretty sure that angelmartyrnursmama is going to be the title of Gwen Stefani's next album.
Also, Gift of Hope operates only in Illinois and Indiana, and I seem to remember that you are in the Southwest? Here's a page I found for Arizona:
But if that's not the right state, just google organ procurement organization *your state here*
There's usually a link for contacting them or volunteering. I just work an information booth at various events and have given talks for organizations interested in hearing more about organ donation. It doesn't take a lot of time and hours are flexible, so it really works with the medically interrupted lifestyle.

Phantom - Ah, yes. And the detox metaphor was not a stretch, at all.
The Hello, Kitty! secret is safe with me. I didn't think anything could be worse than Strawberry Shortcake's endless puns (so "berry" unfunny!), but I was so very wrong.

PPB - even more blushing, but really, you have a *scar*? Have you written about this? If so, how did I miss it?

(above comment deleted for wanton misuse of exclamation points)

4/06/2006 11:23 PM  
Blogger Rowan said...

Cool. I'm going to check it out. Thank you.

Oh, and as for Gwen's album; yes, I believe it is a Red Hot Chili Peppers remake.

4/07/2006 1:10 AM  
Anonymous Beanie Baby said...

That is a beautiful photo.

Thanks for the heads-up on organ donation month. I'll put something up on Beanie baby over the next week. Which of course will CHANGE the WORLD! (more wanton misuse of exclamation points.)

And here's a few more:


Just because it's Friday.

4/07/2006 6:47 AM  
Blogger Yankee T said...

Bless you, all of you. It will be a great day when she is really well!

4/07/2006 11:50 AM  
Anonymous Jamie said...

I have to be honest, in some ways, having a grumpy preschooler would be more normal for me and easier to deal with when they feel so bad and pathetic all they can be is good.

My mom always did the violin thing, but she said it was the world's tiniest violin playing my heart bleeds for you. It used to annoy me so badly that I refuse to do it to Emily (but I do lick my finger to clean stuff off her face and I said I wouldn't do that either)

4/07/2006 12:29 PM  
Anonymous Crystal said...

Moreena I couldn't have described the moods any better! I have the same problem with Trenton, only he can't talk, so he whines and cries all day, on his bad days, but is a beacon of light on the good days! Hope everything gets better, and Annika starts getting a little more energy (although not TOO much energy, for mom's sake!). Prayers sent your way, as always!

4/07/2006 2:16 PM  
Blogger halloweenlover said...

I'm laughing at the violin for Annika. Whininess still qualifies as spunk, right?

4/07/2006 3:00 PM  
Anonymous Hannah said...

I know I said this before, but Annika really has some kind of moviestar-of-the-thirties face (thinking Marlene Dietrich or Garbo and the like...far more exciting than most nowadays stars...)
So no suprise she can ocassionally act quite the tragedy, if water has the wrong temperature ;)

4/07/2006 3:28 PM  
Blogger Moreena said...

Andrea (BB) - !!!!!!!!!!!!!!!!!!!!

Jamie - Yes, my band teacher said that to us all the time, and I also found it hopelessly annoying. But I was just so annoyed with her at the moment that I couldn't help myself (how proud of myself!). I changed the wording because Anni has such a vivid imagination and more than a bit of a morbid streak, and I really don't want to hear what she would do with "my heart bleeds for you."

Hannah - interesting that you should say this. You have, of course, noticed that Annika has a cleft lip and generally asymmetrical features, which I find incredibly interesting and (of course) beautiful. I often find myself wondering if kids will be mean about such a really really little thing. I wonder if she has the spunk to turn a cleft into her own little symbol of pride.

4/07/2006 5:43 PM  
Blogger liz said...

Annika's beautiful. Her face is so expressive. I don't think her cleft is going to be a problem.

I love your violin routine.

4/07/2006 7:38 PM  
Anonymous moonrose said...

Hannah is right-on about '30s movie-star Annika. Yet she is singular, as is Frankie. No cookie-cutter kids for you!

Jerks are jerks, and if they want to pick on someone, they will do it. It needn't be anything obvious or even permanent, it can be, say, the first thing that catches the jerk's eye when (s)he's meanspirited.

I was always sure of my mother's love, and while it couldn't protect me from nasty kids, those kids, in turn, couldn't destroy my self-esteem.

4/07/2006 9:07 PM  
Blogger purple_kangaroo said...

We just discovered a second-hand Hello! Kitty VHS, and my kids love it. Of course, my 3.5yo was in love with Hello Kitty just from seeing pictures already--and because she's been given a shirt, a stuffed animal and a puzzle of Kitty.

4/08/2006 1:33 AM  
Anonymous kathy a said...

annika is so beautiful! and strong and sweet.

my nephew was seriously ill, but in a different way, with brain cancer. i remember those times when he acted out, and the questions about how to handle that. for the most part, keeping things as normal as possible was really good for him.

whiney definitely shows spunk! hugs to you, anni, jorg, and frankie!

4/08/2006 7:42 PM  

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