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, September 15, 2005

all weepy, sorry

I just checked on the girls, and Frankie is sleeping with her arm around Annika. I heard them whispering together through the monitor tonight while I was cleaning the kitchen. Finally Annika said, "OK, Frankie, it's time to go to sleep. You have to close your eyes, OK?" Frankie said, "OK. Night-night. I love you." And Annika said, "I love you, too." Perversely, all this wonderfulness is making me so sad tonight. I'm writing this with tears streaming down my face, so this might be the entry to skip if you're not into self-pity. This is what I mean by perverse: I feel like Frankie is holding on to her sister so tightly because she doesn't want to lose her. After all, her recent separation wasn't just from her mom and dad, but also her beloved sister. Or maybe it's that I'm realizing how much it is going to hurt Frankie if we do lose her. Not to mention Jörg and me. I don't know exactly what I'm thinking. Just that this new relationship that Frankie is developing with Annika is beautiful. And I am dreading what has to be done up in Chicago in a few days or weeks. I want to go back to last month and live the alternate reality where Annika starts her preschool and I grouse about my students and Frankie's vocabulary expands to mispronounce words in a completely R-rated fashion. I had plans this month to meet a friend of mine that I met in the hospital just after Annika's second transplant. She was the mom of Jayli, and I met them just before she had the rex shunt surgery that is currently being considered to fix Annika's problem. You probably already know the story because I keep coming back to it like a woman haunted...shunt did not work, retransplant, PTLD, Jayli died. I wrote to my friend to let her know why I was going to have to cancel our plans to meet, and I haven't heard back from her. I know that part of my weepiness in this current situation is all caught up in the memory of Jayli and what her family went through in the months after the shunt failed. And I suspect that part of my friend's silence might be pain from her own memories of those hard times. I'm trying to keep the atmosphere light around the house, but it's not easy. Frankie dissolves into a desperate weeping fit if I'm out of her sight for more than 5 seconds. And she can no longer fall asleep by herself. At night she clings to Annika, and for naptime, it's me. Yesterday it wasn't even enough to fall asleep beside me, she had to lay on top of me in Annika's bed with her cheek resting against mine. Annika, meanwhile, is struggling with her own unhappiness. The past few days she was having fevers with no other symptoms of illness, which always sets my nerves on edge. In the middle of the night she came to me for water and Tylenol and comfort. Her voice wavered a bit as she asked, "How come I have to be sick again already?" But then the morning comes and the fever is gone and Annika is ready for a new day. Tomorrow she plans on dressing up like a bear. Don't ask me; that's just what she wants to do. If anyone has any good suggestions for how, exactly, we could accomplish this without having to actually go and buy Bear-like things, please please let me know. And there have been plenty of moments to make me laugh, appropriately or not. For one thing, Annika has taken to self-diagnosing her state of health. But she doesn't just go around willy-nilly declaring herself "healthy" or "sick" depending on her mood. No, she has a scientific method used for reaching her diagnosis, which she shared with me the other day: Scene: the bathroom in the hospital lab, where Annika is taking waaaaaay too much time in the one area designated for collecting urine samples. Annika (peering between her legs into the bowl): "Oh, no! Look at that!" Me (the panic I now feel every time Annika uses the toilet growing more intense): "What is it? Is everything OK? Is it blood?" Annika: "No, but it's stinky mud poopy." Me: "Stinky, mud poopy?" (I look in the bowl and see that she has, indeed, described it pretty well) Annika: "Yes. I have stinky mud poopy when I'm sick. When I'm healthy, I have stick poopy." Frankie (excitedly tugging her pants down): "Poopy, too!" Pretty damn ingenious, if you ask me. And then there was the incident of the time-out 2 days ago, after she threw a tantrum because Frankie refused to put on the Princess dress that Annika had so carefully chosen for her. Annika cracked open the door just a tiny bit (she's not allowed to open the door during a time-out) and yelled out, "I'm a Princess! Not a Prisoner!" Then closed the door with as little noise as possible. And in the spirit of comedic naughtiness, one last vignette: Annika, Frankie, and I were all in the backyard. The girls were playing together while I was storing things for fall in the shed. Frankie came over to check out what I was doing, and when I looked up, I saw her mouth was ringed in sand. "Frankie!" I said, scoldingly, "Have you been eating sand? Again?" Frankie turns her back to me, and I hear the sound of spitting and spy bits of sand falling to the ground. She turns back to face me and says, "Uhhhhhhhh, no!" OK. I'm feeling much better now. Thank you, keyboard.

27 Comments:

Blogger Scrivener said...

Hang in there, moreena! It is so painful to hear about you listening to your girls being lovey with each other like that, something that I just adore in my own children, and you're thinking about the scary future implications.

I'm wishing good thoughts for you and for Annika.

9/15/2005 11:39 PM  
Anonymous Beanie Baby said...

(((hugs)))

There was one time when one of the doctors, during the ultrasound fiasco, briefly discussed fatal dwarfisms. It was horrible for the brief time it lasted. I can't imagine living there.

It's not self-pity. IT's one of the scariest, hardest things to contemplate. You are doing a fabulous job.

I'm thinking of you, and Annika, and Frankie.

9/16/2005 6:29 AM  
Anonymous Anonymous said...

Oh my! I am sitting here alternately laughing and crying! I have no words to comfort you Moreena - I wish I did. You have two such beautiful girls. Precious girls. And to think of something happening to either of them must be unbearable. You have been so incredibly blessed to have a daughter such as Anni. Your stories about her never fail to delight me. To me, she seems a constant source of joy - a little sunbeam who lives live to the fullest. My prayers continue that you have many more years to enjoy this precious gift. I imagine you must be on pins and needles waiting for this surgery. Hang in there and try to enjoy this time. Remember so many of us out here in cyber land are holding you all close.

(((Moreena)))

9/16/2005 6:43 AM  
Blogger Mike said...

If the worst happens, you'll find a way to survive, and you'll keep loving Jorg, and Frankie, and Annika, too. With all that you've been through, you already have all the strength you need to cope with that particular worst-case scenario. You've done the prep work for it.

This is the picture I have in my head: Anni's on the phone with you because HER daughter has a fever, and you're telling her about the rough times you went through when she was that age, rough times she doesn't even remember now. By the end of the call, you're both laughing.

9/16/2005 9:37 AM  
Anonymous Becca - momofnataliebear said...

Big bear hugs coming your way.

Perhaps, Anni would like to dress as a Nataliebear? :)

We're praying so hard for you. I wish there was more that I could do.

9/16/2005 9:49 AM  
Blogger Phantom Scribbler said...

Oh, Moreena. This is probably the least self-pitying thing I've ever read.

Sending you hugs, thoughts, and prayers. And keeping an eye out for bear costumes.

9/16/2005 10:05 AM  
Blogger Karen said...

Moreena

I have been following Annika's recent developments. Just wanted to let you know you guys are in our prayers, at the top of our list.

Karen - Jen & Jon's mom

9/16/2005 10:25 AM  
Blogger Karen said...

ok, I am trying to learn how to leave comments here, forgive me if this posts twice. I have been following Annika's recent health developments. Just wanted to let you know that you guys are at the top of our prayer list. Moreena, you are doing such a wonderful job as a mom. It is evident in both girls. Annika seems to be wise beyond her years.

With love & prayers,

Karen - Jen & Jon's mom

9/16/2005 10:29 AM  
Blogger Elle said...

I wish I could say something to you that would ease your fear and pain, I really do. Words have so many limitations, especially when it comes to emotions. I understand what you mean when you talk about your girls relationship. It's like some totally unexpected separate wonderful thing blossoms on its own. I'm watching it happen between my sons. I pray to God that Anni is okay, with all of my heart. I pray that Anni's body will be able to keep her amazing spirit here with us. Stay strong.

9/16/2005 10:36 AM  
Anonymous Anonymous said...

Moreena - I'm sorry - the earlier *annonymous* post was me - tina!

9/16/2005 10:55 AM  
Anonymous Amy.... Carly's Mom said...

Moreena,
You and your family are in my prayers. I think it's so beautiful that you always cherish the "every day" occurrances and tuck them in your heart. You describe them wonderfully...I can just see that little gift silently opening her door to make sure you know she's a princess! Thinking of you.

9/16/2005 11:09 AM  
Blogger liz said...

Moreena, you are all in my thoughts. Big hugs.

And about the bear thing...brown or black leotard and tights, black paper taped onto her nose, brown or black ears on a head band?

9/16/2005 11:30 AM  
Blogger Sarah said...

Oh Moreena, it's not self pitty, you are worried about your litle girl, it's only human. Sending you big hugs, as well as your whole famiiy including Annika of course. You all are in our thoughts and prayers.

9/16/2005 11:32 AM  
Anonymous Lisa and Aiden said...

I will be praying for you guys... Your words brought me to tears.God bless Anni and what she has to face. God bless Jayli and the mark she left behind for all of us. I think of her all the time, and always with a smile.

I will thinking of you during the surgery and want you to know that we are PRAYING.

9/16/2005 12:15 PM  
Blogger Yankee T said...

Oh, Moreena, I wish I could help. That kind of sweet conversation between my daughters made my eyes well up, and we had no worries. Take care of yourself through all this and don't get too tired; it makes everything worse. You and Jorg and the girls are being held close to my heart.

9/16/2005 12:30 PM  
Anonymous Stacy - Tanner's mom from CLASS said...

Moreena -

Poor Anni is wise beyond her years. We're praying for wisdom on the doctor's part in the coming weaks - that they make the right choice for Anni. We're also praying for Anni to remain "stable" in the meantime. You're in our thoughts.

9/16/2005 12:45 PM  
Anonymous Laurie, Ashley's Mom from CLASS said...

Oh Moreena, even though CLASS is down I try very hard to keep up with all OUR KIDs. I check your site just about once a day. I enjoy reading about you and especially your girls.

Self-pity, it's not! I am so sorry to hear that latest on Annika's health. And knowing that this is the road that Jayli traveled must be making your head spin! I am praying that Annika's road is different that she finds Holland again instead of another god forsaken place.

Prayers and Hugs to you, Jorge, Frankie and especially "Princess" Annika!

Laurie, mom to Ashley from CLASS

9/16/2005 3:38 PM  
Blogger Running2Ks said...

I'm so sorry. Please know that my thoughts and prayers are with your family. I know it is hard, but enjoy this good as you have been doing. You are doing a wonderful job giving them so much love and happiness. Your children are precious..."I'm a Princess! Not a Prisoner!" Perfect.

9/16/2005 6:32 PM  
Anonymous Robyn, Emma's mom said...

Moreena, I am praying hard for you guys. It's not self-pity at all. I have nothing helpful to add, except the bleeding part of Emma's liver disease was horrible and scary and I'm so so so sorry.

9/16/2005 9:20 PM  
Blogger ocelot said...

Annika and Frankie are an adorable pair. There's so many possible futures in store for them. One is sincerely unfathomable. My hopes and dreams are with you guys.
:.(

Google had some decent hits for homemade bear costumes.

9/17/2005 12:40 AM  
Blogger Shannon, Little Marisa' s Mommy said...

Moreena,

As always, I laughed and cried as I read through your past few posts. I've been MIA for a while as far as the computer is concerned and had no idea that Annika (and you) had gone through so much recently. As I read your words, Marisa's (thankfully her only) bleed vividly came back to me. My prayers are with you, your family, and your doctors. May the right choices be made for her to finally be a healthy little girl. I'll check back often for more updates.

Love,
Shannon, Little Marisa's Mommy

9/17/2005 8:47 AM  
Anonymous Anonymous said...

M-
For bear gear I would recommend one of daddys or mommys mohair sweaters , or snuggly textured tannish/brown sweater or inside out sweatshirt. You can also fashion brown tights/pantyhose into a bear hat. Cover headband with hose and fashion brown paper ears! Eyeliner to the face for whiskers and panyhose again stuffed with tissue paper for the tail . Voila! Growl , growl..

okay, onto the sappy stuff. Keep crying, blogging, filming, talking and get it all out- you are living a real life and it is tough, so hang in there. Oh and give/get lots of hugs and kisses. Wishing you the best... suzanne , www.specialneedsmom.com

9/18/2005 4:48 PM  
Blogger jo(e) said...

(o)

9/18/2005 6:00 PM  
Blogger allison said...

Hey, when we want to dress up as something, and don't want to go out and "buy" all the stuff, we start digging around...a bear. Hum, how bout mittens? Does she have a sweat suit in a neutral color? Can you pin a sort of "bear tail" on her, something sort of short, but bunchy? Paint whiskers on her face? Is there an old tobaggan or so that you could sew or paste scrap fabric ears on to look like a bears? Even pasta noodle (the short kind, like macaroni) somehow affixed to the end of the mittens, like claws? Let her eat honey on anything one day? Just some out there thoughts, but when I read your stuff, I wanted to pitch in...blog away to help diffuse your frustration and confusion...writing is a perfect outlet, and through this forum, you get support from others, too! Prayers for you, and your children, and husband.

9/18/2005 10:14 PM  
Blogger Jessica said...

Moreena,

I have been thinking a lot about you and your family...thank you for continuing to keep us updated and entertained - your little ones are so precious, smart and funny.

9/19/2005 12:24 PM  
Anonymous Rowan said...

Self-pity, my foot!
I think that blogging is a cheaper and more readily available version of therapy. As you said, "Thank you, keyboard."
It is healthy for you to keep a log of these times -- for now & for later.

I barely know you. But I feel so much for you and for your family. You will stay in my heart through this time of trial. I hope that the support from afar helps to bolster you and keep you strong.

9/19/2005 10:23 PM  
Blogger Emma said...

Moreena,

I just wanted to stop by and let you know that you are all in my thoughts and Prayers. Hoping things are going well and you are having Happy times at home.

~Emma
(postcards from holland)

9/20/2005 10:28 AM  

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