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.

Sunday, December 25, 2005

Christmas? Well, OK. I guess so.

To be honest, Christmas has never been too good to us. Of the 6 Christmases since we've been a family, 3 of them have been spent in the midst of major medical mayhem: 2000 - Annika's first surgery at 6 weeks, 2001 - the discovery that her first transplant was failing and a second would be necessary, and now 2005 - this...this...whatever. The list of things going wrong right now is too depressing to list on a Christmas entry. Then there was a 4th Christmas, 2003, only shadowed by a runny nose, which, a few weeks later, proved to be the beginning of Anni's adventures with PTLD, followed shortly thereafter by the Neverending Rejection Episode. Two out of six just doesn't cut it in my book. The Christmas Elf in charge of the Tiede holiday season has obviously been hitting the egg nog a bit too heavily. It was hard to leave Anni's hospital room last Thursday afternoon. But she was looking comfortable, with a good heart rate and encouraging lab numbers. Still, I worried what would happen if she should wake up and I wasn't there to hold her hand and stroke her side just so and make sure her music was playing. Yes, Jörg was staying with her, but I worried anyway. Then, just before I left, Annika woke up in her usual unsettled state. Jörg was up and by her bedside before I had even reacted, and I watched the way she relaxed when she heard his voice. And then I knew that I was indulging some senseless worrying. As I was gathering my bags to leave, Jörg peppered me with questions: Did I have the list of stuff to bring back? How about the parking ticket? And the keys? The final question he called out as I was practically out the door was the real kicker. "Do you know how you're going back home?" Having driven the route successfully on more than just one or two occasions, I realized that I was not the only one indulging in senseless worrying. I guess when there's so much justifiable worrying going on in, it just tends to spill over onto even the most mundane aspects of your life. Having finally stepped out the door and made the final decision to go, I was suddenly in a mad rush to be home. I jogged to the car, scooted out of the garage, and merged onto the highway ready to put my cruise control somewhere above the legal limit. Luckily, there was little traffic to slow me down, but suddenly all the cars around me were carefully under the speed limit. Off in the right lane ahead of me, I saw why. There was an Illinois state police cruiser, toodling along in no great hurry. Like everyone else, I tapped the brakes and fell into line. But after 5 minutes of good citizenship, I began to wonder if all this was really necessary. After all, I didn't want to speed that much. Just enough to make me feel like home was just around the corner. Besides, I was positive that, if I were to be pulled over, I had an overabundance of tears just waiting for the right moment to appear. Plus, I had a clean record, not even any warnings, and a hell of a reason to be in a hurry. So I took a breath, pulled into the left lane, and passed the police cruiser, above the limit, but not flauntingly so. In my rearview mirror, I saw a mass exodus from the right lane to the left behind me. My rear bumper might as well have been magnetic. All those drivers exhaling at once, "Finally. We can just follow that idiot up there in front." No flashing lights, no sobbing necessary, I was on my way. When I was just an hour away, I called my mom to let her know I was almost home. We hadn't told Frankie I was coming because, well, you never know when something might come up that would make leaving a bad idea. I thought my mom would go ahead and tell Frankie now that my arrival was imminent. My mom, though, thought that leaving it as a surprise would be fun. So when she heard me pull into the garage, she picked Frankie up and carried her to the door. I opened my car door and saw Frankie squinting out into the darkened garage, looking none too pleased with the sudden cold wind on her feet. Frankie didn't see me at first, but when I stood up out of the car seat, I heard her gasp. This was an honest-to-goodness gasp, like all the breath in her little body rushed out in her surprise. Then she shouted, "Oh! Oh! Mommy!" and she begin to try to wiggle her way down out of my mom's arms. My mom held tight since Frankie wasn't wearing any shoes, but I just dropped my bags on the front seat of the car and came running to grab her up. Just as quickly as my arms went around her, her arms wrapped around my neck in a squeeze harder than I thought a 2-year-old capable of. I brought her back into the warm house and hugged and hugged her, Frankie's little arms never loosening as she burrowed her head into my neck. As a little experiment, I pulled the support of my arms back a little bit, and, as I suspected would be the case, she still hung there around my neck, on the strength of her own clinging arms. Squeezing her hard to me again, I knew that this was my early Christmas present. Finally I told her that I needed to put her down and bring my things out of the car. When her feet hit the ground she began to do a little skip-twirl combination move as she laughed the happiest laugh I've ever heard from her. "Mommy!" she exulted, "I am so 'pised wis you!" "Oh, really? You are surprised?" "Yes! Yes! Yes!" After I had my bags in and my coat off, she came to take my hand. "You come pay Yucky Ducks wis me now?" And we played Lucky Ducks for the next 30 minutes. I set out the red, green, yellow, and blue ponds and then asked her which color she would like to be. "Orange!" she replied without hesitation. Oh, you girls of mine. Must you two always blaze your own paths? So that was the best welcome home, ever. Of course, I was mindful of all those times when my return home, admittedly after a much shorter time away, was greeted with only mild to middling enthusiasm. It's a disappointment to feel you're not missed, even though you know it's a sign that your children feel safe and secure in your constancy. And now I was finally getting that pure joy at a homecoming, and here I was worrying about the psychological ramifications, and whether or not Frankie's need for security was being met throughout all this. So, yeah, it's no wonder parenthood will drive you chase-your-tail-both-directions crazy. For the rest of the evening I just basked in the glorious wonder of my over-the-top two-year-old. After her genuine and unabashed display of joy at my arrival, I was treated to several hours of Frankie's slightly more artificial displays of happiness. All it took was a look or a funny sound from me, and she would pop out her belly and slap it with both hands while emitting this ha-ha-ha-ha-ha-ha laugh that, while coming from a place of real delight, sounds just the tiniest bit forced. It makes me laugh, anyway. I marveled at the changes in my little one in just these past few weeks. Let me tell you, if you think it is disconcerting to hear your child talking just like you sometimes, just imagine hearing your child sounding exactly like your mother. "Oh, gracious!" Frankie scolded her animatronic pup, "You are making such a mess!" I'm just waiting for the moment she exclaims, "Heavens to Betsy!" and throws up her hands. I was doing fine myself until it came time to rock Frankie to sleep. My mom had moved the rocking chair (or had Jörg move it, more precisely) into the girls' bedroom, so that's where we sat together, listening to Frankie's current favorite lullaby CD. Sitting there, looking around the newly decorated room which had tickled Annika's fancy so much, I missed my little imp still in Chicago. But it was the bunk beds that really got me. Bunk beds are for two to sleep in, you know. That's where her absence was most noticeable, with her new pink bathrobe (passed down from her neighbor/hero Sabrina, as all her favorite things are) hanging from the top post. That night, freed from the responsibility of staying in the PICU with Annika, I decided a beer or two were in order. So I made myself a dinner of two slices of toast, and downed the first bottle. Normally, I'm a little off-balance after only one beer, given how out of practice I am at holding my liquor. But that one little beer didn't even make a dent. Two more bottles quickly followed, with similarly little effect. I can only assume that I had spent so long keeping myself on high alert that even three beers, being absorbed by only two measly slices of wheat toast, were not enough to dull that sharpness. Giving up, I headed for bed. As I settled in, the thought occurred to me that, if something were to happen at the hospital with Annika, I probably had had too many to drive, even if my mind had refused to go to that blurry, soft-filter place. Damning my shortsightedness, I made sure the ringer was on on the bedside phone, and hoped all would be well. In the middle of the night, I awoke to the unfamiliar sound of a child crying. I knew it couldn't be Anni, with her vocal cords immobilized by the breathing tube, so I was struggling to understand the sound. "Matthew!" I thought, assuming it was our PICU neighbor. "Oh, wow! He's finally been extubated. You go, little man!" But then I pulled up enough out of sleep to remember that I wasn't at the hospital, and the sound was, of course, Frankie. I went to her and found her sitting up in bed. "Mommy!" she sobbed. I reached over to her, "Lay down, little one, and I'll rub your back." She flopped down on her tummy, but turned her face to the side to look at me. "Where's Nonny?" she asked, for the first time. "She's still at the hospital, sweetpea. She's sleeping. She is still very sick, and needs lots of rest and special medicine from the hospital. She will come back home when she is all better again. Daddy is staying there with her right now, keeping her safe, and they are both sleeping." And so she drifted back off to sleep, and slept for 14 hours that night, exhausted from the many restless nights she's spent alone in a room meant for two. The next day, Friday, was less dramatic. We ran errands and organized clothes and cleaned house and it was all a pretty good semblance of normal life. Jörg called and said that Annika was still holding steady, and we all went to bed much easier that night. I drank only one beer, though, and only because it was the last one in the fridge. Just in case. And I still checked to make sure the ringer was on. Yesterday, I returned to the hospital with my mom and Frankie. Frankie, in the back seat with my mom, fell asleep almost as soon as the car left the drive, and I was left to switch between radio stations, searching for something besides Christmas music. Willing my grinchiness away, I compromised on a station that offered only intermittent holiday cheer, rather than the relentless non-stop of most of the other stations. (They don't call them Mannheim Steamroller for nothing. There's no escaping those guys.) Looking through my rain-drizzled windshield at the gray sky, I saw that there were thousands of birds flying south. The sky was just filled with them in all directions, in several groups of very loose "V"s. "Hmmmmm," I thought to myself, "Aren't you guys a bit behind schedule? You're not really beating the winter weather at this point, you know." Poor birds. Then, a few minutes later, I saw a group of stragglers. But these guys weren't flying south with the others. They were resolutely on their way east. "Wrong direction, guys" I thought, because I'm pretty sure having mental conversations with birds is not a sign of a nervous breakdown or anything. But then the radio station started playing a Christmas song, and there I was, headed away from home on Christmas eve. Totally the wrong direction, myself. So I gave them a thumbs-up, which, of course, I know birds don't get, and wished them well on their flight. Frankie awoke as we were passing the lights of downtown Chicago. "This is 'cago?" she asked. When she heard that it was, she declared that she wanted to see Nonny. I hadn't been planning on taking her in to see Annika while she's on the ventilator, figuring that would be kind of scary for a 2-year-old. But she was not to be dissuaded, so I finally agreed. Arriving at the Kohl's house, though, we discovered that Matthew's little sister, Lauren, was at the house. She was up to celebrate Christmas, and also to prepare to donate another round of stem cells to her brother. Lauren is 2, like Frankie, and also like Frankie, she hasn't been allowed to play much with other kids lately, out of fear that she'll pick something up that will spread through the family to their sick siblings. So Frankie and Lauren were excited to play together, and I left her happily playing when I went over to the hospital (but, of course, I did offer to take Frankie and was much relieved when she said no). I was glad that Frankie had not come with me. Annika was not looking good. She has gotten much puffier as the fluid in her body is stored in the wrong places and her eyelids, swollen like the rest of her, were an angry purple shade. One look at the numbers on the monitors also told me that she had slipped in her recovery. Her heart rate, comfortably slow when I had left, was back up to the rapid beating of a body under stress, and her oxygen levels were down, despite the fact that I saw that her ventilator settings had increased considerably over the past two days. Jörg told me that her labs today had been horrible, with her liver numbers shooting up (the labs that let you know how healthy the liver is, or can also indicate infection status), as did her coagulation time (the amount of time it takes blood to clot - since Anni's been a bleeder, this can spell trouble). And, evidently, her chest x-ray from this morning did not look good. So, who knows? Another infection some place else in her body? Pneumonia? Liver troubles? We're back to wondering what the next step will be. Then, just to make sure the holiday was greeted in style, Annika had another acute bleed last night. Yes, it's Christmas as usual around here. I'm thinking of just moving the whole damned holiday to April, for good. But I suppose that, unless I plan on storing the kids in the basement for the 3 months leading up to Christmas, they're going to know something is up. Plus, if I really follow through on the whole Christmas postponement thing from now on, I know it will be exhibit A during my kids' group sessions describing how their parents ruined their childhood for them. "Oh, yeah? You think your mom was crazy? Well, mine was so superstitious that she pretended Christmas didn't happen until April. That's right, the Christmas tree came out with the daffodils. Cuckoo!" So bring it on, Christmas. We've taken you before, and we'll take you again. I believe that Anni will be just fine. I believe that Anni will wake up and be so pissed that you have come and gone already while she was sleeping. So watch your back, Christmas. Anni's got a long memory, you know.
If you've made it through all the weep and whine above, then you deserve some real Christmas spirit. So here's my Christmas wish for you: Find someone near and dear to you, and give them a hug. But not the usual arms-resting-lightly-on-the-back kind of hug. Pull them hard against your chest and rest your head on their shoulder or chest, depending on the height differential. Then hold that position, tight, until it feels right. OK, you might get some funny looks. If you feel like being mysteriously obscure (really really obscure), you can say, "Hey, it's a Frankie thing." If you're feeling more straightforward you can just say, "Hey, I love you." So it's sappy. So what? I hope it gives you as much peace and joy as it gave me. Merry Christmas.


Blogger Running2Ks said...

Moreena, thank you. Even in this scary time, you have found a way to spread joy. I'm going out to give my Frankie hugs, good gracious, and I have virtual ones saved up for you and your family. May you kick Christmas's butt this year and come out the other side with a happy, strong, and healthy family. Merry Christmas--early, and again in April.

12/25/2005 1:51 PM  
Anonymous Anonymous said...

Oh Moreena! Wishing your family peace and joy. I hold you all in my heart.

I'm going to go hug someone now.

xo Catherine

12/25/2005 1:57 PM  
Blogger Phantom Scribbler said...

Thinking of you, Moreena. Every minute.

I'll go hug someone now, too.

12/25/2005 3:06 PM  
Anonymous Anonymous said...

Moreena--We are sending prayers and love. Wish I could will things to go better, faster. Blessings of the season. MaryW

12/25/2005 4:16 PM  
Anonymous chasmyn said...

Oh, I second that sentiment. My heart is with you, with your beautiful girls. I know all too well how horrid it is spending Christmas in the hospital, in the PICU. I agree - my wish for you, for Annie, is that you both kick its butt, that she comes out fighting and as you said, pissed that she missed it. Strength and peace to you, my friend.

12/25/2005 4:49 PM  
Anonymous Crystal LaMadline said...

Moreena, Your family is in our hearts and prayers throughout this difficult time. I could so relate to some of your story, and your story telling is just amazing! You should write children's books (I would leave out the beer parts though! LOL). You are a strong woman, and very courageous, and it sounds like you have two wonderful little girls that will follow in their mommy's footsteps. Keep the humor in life, and it will get you so much farther! Trust me, I have learned that the hard way! Good luck to you, Merry Christmas, and May you have a Happy New Year, filled with little excitement!


The LaMadline Family

12/25/2005 8:20 PM  
Blogger Tara Marie said...

Merry, Merry Christmas to you Moreena and your beautiful and very special family.

Your Christmas entry was my Christmas gift.....a gift so incredible and priceless.

May 2006 be a year of healing and answers and two sweet little girls back together sharing the same bedroom and sweet dreams that only sisters can dream.

Peace and love, Tara Marie & Emma Sage and family

12/25/2005 9:02 PM  
Blogger Shelli said...

Thank you for reminding us what is important. I am going to go hug my children tight and tell them it is a Frankie thing! ;)

12/25/2005 9:04 PM  
Anonymous Irene(CLASS) said...

My thoughts and prayers are with you all this Christmas.
God Bless you!

12/25/2005 9:53 PM  
Blogger ccw said...

What a wonderful reminder of what truly is important. Lots of Frankie hugs to give while I have my family here.

Our thoughts and prayers are with your family. Merry Christmas!

12/25/2005 9:54 PM  
Anonymous Tammy, mom to Janna said...

You are amazing to be able to write all that with everything going on with Annika. I pray that Annika starts improving again. I have a good two year old hugger named Janna. I call her our lover girl. We are thinking of you all the time.

12/25/2005 10:24 PM  
Anonymous Joanna said...

Glad you got home to your Frankie but how hard to return to see Annika battling a new something. I have been Frankie hugging my little monsters (and one big one) all weekend and thinking of you so much. Keep strong through each minute, hour and day with your Anni. Much love.

12/25/2005 10:33 PM  
Blogger Annika said...

I wish you a very happy Christmas, whenever you celebrate it.

12/25/2005 11:08 PM  
Blogger Kathryn said...

Thank you for posting Moreena...My son wants to change our broadband provider and thought this would be a good time of year to do it,but I've said he can't because I need to know what's happening for all of you. I'm sorry that Christmas just hasn't come together for your family...But we're all still here and still praying and sending tons of virtual hugs before heading off to do some Frankie hugging around the family. Love and prayers xx

12/26/2005 5:34 AM  
Blogger Jay said...

I know it's tough to not really celebrate Christmas in true style, but there are more important things than trees and stockings, and right now your life revolves around these things. Of course, I wish for you and your family the best gift of all, the gift of health. May it arrive SOON! But until then, I think it's safe to say that your family is in a good place because you miss each other, worry about each other, and obviously share a lot of love. And at the end of the day, that is a real blessing despite everything else.

12/26/2005 6:04 AM  
Anonymous Lisa (Aiden's mom) said...

I wish I could "Frankie hug" you right now. Much love and prayers for you tonight. I am so sorry things are so horrible right now. We are all thinking about you everyday all the time. Praying she gets better.

12/26/2005 7:10 AM  
Blogger liz said...

Going to hug someone RIGHT NOW.

I love you and your family. I wish for you a very Merry Christmas with your whole family at home and healthy next year and all the years following.

12/26/2005 7:17 AM  
Anonymous Beanie Baby said...

I'm glad you had a Frankie respite filled with hugs and love.

I'm thinking of you and your family.

12/26/2005 8:50 AM  
Blogger Yankee T said...

God, Moreena, you're amazing. Sending my loving thoughts your way, as always.

12/26/2005 10:00 AM  
Blogger Rev Dr Mom said...

Hugs for you and yours, Moreena. Anni and all of you remain in my prayers.

12/26/2005 10:12 AM  
Blogger Elle said...

Oh, Moreena, I'm hugging YOU first in pure Frankie style.

12/26/2005 10:18 AM  
Anonymous Lauren said...

Here's an e-Hug for you, Moreena!
God Bless You!

12/26/2005 11:12 AM  
Anonymous Anonymous said...

Moreena, as always, thinking of you and sending prayers and Frankie hugs from Virginia.

Shelley, Mom to Caroline (tx 3/01)

12/26/2005 1:48 PM  
Anonymous Becca, Jason, & Natalie said...

Merry Christmas to you too my friend. Or as Natalie would say, "Merry ho, ho..."

We'll see you on the 5th of January...

12/26/2005 2:13 PM  
Blogger jo(e) said...

Thank you, Moreena. You're wonderful.

12/26/2005 5:48 PM  
Blogger timna said...

Thinking about you tonight. and passing those hugs on.

12/26/2005 9:04 PM  
Anonymous Jamie said...

I haven't checked in here for a while, awash in my own issues and holiday making. I was so hoping to read that the week or so had brought you good news and admit I spent the last hour reading in tears.

I will keep you all in my prayer.

12/26/2005 10:32 PM  
Blogger Kathryn said...

Another day, and more love and hugs heading your way, while prayers continue.

12/27/2005 4:12 AM  
Anonymous Robyn, Emma's mom said...

Keeping your family in my thoughts and prayers.

12/27/2005 8:22 AM  
Anonymous Miriam said...

If I could, I'd petition to have the entire world move Christmas to April for your family. So glad that you got to enjoy Frankie hugs, and really hope there's good news on Annika soon.

12/27/2005 1:04 PM  
Blogger Michelle said...

As I type this, my eyes are welled up with tears. I am so thankful for my 2 year old daughter and my 8 year old son. I know the joy that comes with every adorable saying...every new slang term...and every big "squeeze" hug as we call it. But I don't know what you are going through with the rest. I can only hope that your Annika puts on her bravest face and kicks this in the butt and your Frankie stays the good little sister that she is.

I'm gonna go hug my little ones...again.

12/27/2005 2:30 PM  
Blogger Shannon, Little Marisa' s Mommy said...


Hoping that today is better for Annika. Your family is never far from our thoughts and prayers.

12/27/2005 4:02 PM  
Anonymous Anonymous said...

Thinking of you, Moreena.

xo Catherine

12/28/2005 8:48 AM  
Blogger liz said...

Just got a new CD for Christmas by Christine Lavin and the Mistletones called "Songs and Bedtime Stories for the Holidays"

Do you have it? If not, I'll ship a copy to you. Lots of a capella rounds. Really soothing and lovely.

12/28/2005 10:34 AM  

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