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.

Saturday, December 10, 2005

not quite 1000 words

I haven't taken a picture of Annika since the surgery. I haven't taken any pictures of her on the ventilator, or shadowed by an I.V. pole decorated with bags and tubes and the festive lights of triple-line pumps. I haven't taken any pictures of her hugely swollen belly, or the large dressing that still covers her new incision, which follows the scar from her previous transplants. And I will not take pictures of her now, with the greatly detested N.G. tube snaking across her cheek and streaked with blood, which is being used to monitor her bleeds more closely. I will not take pictures of her little belly button, which is ringed red with the pressure of the fluid stretching it taut, but resolutely still an inny, much like my own belly button, when the pressure against it was Annika's own unborn baby self. I haven't taken pictures of her curly hair, rubbed angrily into the hospital pillowcase for the past 9 days until it has formed into little stalagmites rising perpendicular from her scalp, the gravity-defying dredlocks of a Trollz doll. I took pictures, many pictures, when Annika stripped naked and crawled up into the bathroom sink, taking advantage of the view afforded by the large bathroom mirror to see how she would look covered in 3/4 of a bottle of Vaseline Intensive Care lotion. I found her giggling as she slipped and sloshed greasily around the cool porcelain basin, unable to lift herself out of the slippery mess. I took pictures when she took the giant plastic jacks that she had "won" for holding still for an I.V placement (piece of cake), and carefully stuffed one in each of her nostrils and the openings of her ears, proudly showing off the look like it was the new facial ornamentation for Tribe Annika. I took pictures of her the first time she dressed herself, with her underwear jauntily displayed over her pants. I took pictures of her the first time she fed Frankie, yogurt dripping fetchingly from Frankie's chin and smeared up Annika's arms. Somehow these hospital images don't feel like the kind that should be placed in a photo album alongside the pictorial record of all those firsts and all those amusing antics of childhood. But I know this makes little sense. For one thing, I know of parents who have taken moving and beautiful photos of their children at their most physically vulnerable, pre- and post-transplant. For another, I have devoted more words to describing the hospital life and transplant experience than to any other topic. So it's not exactly like I'm letting these moments pass into amnesiac oblivion. I wonder what Annika, the future, mature Annika, would want or need me to do. Jörg brought me some magazines from home to pass the time while Anni sleeps. In last week's Newsweek, the My Turn article was written by a mother describing her efforts to reconnect with her teen-aged son, and to make sure that his typical teen feeling of carefree invincibility was tempered by a respect for both the majesty and the frailty of life. Will there come a day when Annika will want to see photos of her younger self with tubing radiating from her body in all directions, while the delicate tissues of her lungs inflate and deflate with gentle puffs from a bedside machine? Will there come a day when those images might teach her the lesson that life is both fragile and remarkable? Maybe I should just take a few pictures and then put them in an envelope marked, "Annika: for when you're ready." Or perhaps more accurately, "Annika: for when your mother is ready."

21 Comments:

Anonymous Anonymous said...

Oh Moreena, how beautiful. Annika will read your writings one day--this testimony to her fierce spirit and tremendous courage--and she will marvel over herself and, inevitably, over you too. Your love for her shines from every word, and you amaze me with it. Thank you for this today. I will treasure it.

xo Catherine

12/10/2005 9:42 AM  
Anonymous Mary Lee said...

Nora is now 13 years old, having been transplanted at 13 days old. The hospital staff took a few polaroids of her which is the only visual record we have both pre and post transplant which I stowed away. Nora has absolutely no interest in seeing these photos. She does not associate herself with that very sick child.
I am hoping and praying that this now identified bleeding will stop from the infusion of octreotide and have the ability to heal with the relief the shunt was to have provided from the portal hypterension.
Your Annika has completely invaded my waking and non waking thoughts. I pray to Padre Pio for her who has always been there for Nora.

12/10/2005 10:04 AM  
Anonymous Becca, Jason, & Natalie said...

Sigh...the picture issue...what mom of a "liver kid" - or heck any kid for that matter - that has spent as much of their lives in the hospital as our's have, well what I'm saying is that this is something that we've had issues with too.

So I took the pictures. I took pictures for all of Natalie's other "big moments" it just so happens that most of our "big moments" happen in the hospital (first step, first sippy cup, first big kid food, first surgery, etc. all in the confines of a hospital). So I took the pictures and I placed them in chronological order ('cause I'm like that) in with the rest of her pictures. I've even put some that are hard for me to look at on her web page.

It's a tough call, Moreena, you have Annika's best interests at heart, and that's all that matters. We'll see you Thursday, my friend.

12/10/2005 10:15 AM  
Blogger Sarah said...

I never took any pictures of Anna at her sickest. I don't think I ever even thought about it. You wip out your camera, naturally, for special events, and cute moments. I wish now that I would have taken a few at least just so that Anna can understand one day just how very sick she was.

Prayers for Annika being said more than once every day. You are always in our thoughts.

12/10/2005 10:58 AM  
Anonymous Sheryl and Justice said...

Moreena, it still amazes me how connected our "liver kids" are while being so different. Your words will share with Anni more than my pictures will be able to tell Justice... But I do remember having a similar thought with pictures vs video when he transplanted. Justice was six months old and we'd recorded most of his life on video (hours of him laying on the floor staring at the camera...it's odd but I still love it!). Anyway, we brought the camcorder to the hospital each time he was in and never, ever took it out. I couldn't. It didn't seem right. And for the same reason you won't have visual snapshots, we will just have a page turning scrapbook of Justice's medical journey.

Praying for all of our kiddos' happily every afters....

Hugs to you.

12/10/2005 11:21 AM  
Anonymous Rowan said...

We have always taken photos. The first time was because we didn't know what we were dealing with. We had no idea whether she'd live through the night, and at 39 days we wanted a reminder photo.

Then we would take photos after each surgery to send to our family so that they could get used to the new buttons and tubes before arriving for visits.

When she was at her roughest (Christmas before last), we wanted Maya to be able to visit her on Christmas day. The staff was (rightly) worried that she would find the sight to be disturbing, so they took a poloroid of Kajsa. We took it over to the parent apartments and talked about everything she saw and what the purpose was. This helped her quite a bit.

I have all of these photos at hand, because they are a part of Kajsa's life. They sometimes help ME when I am feeling most overwhelmed by my schedule during times of - way too many - doctor appointments. I can look at them and remamber how easy it is to return to a state of great fragility and how far we've come.

It seems to me that you are unfortunately going through a time when you need no reminders. Nonetheless, I think you're right. When Annika is older, she very likely will enter into that age of imagined invincibility. Perhaps, by then she will acutally benefit from a reminder.

But these may not need to be photos. Your writing is to real and vibrant. I don't see how she could not relate to your feelings at the time of writing. Unless, she has become so used to it that she needs a different format for the reality to be seen.

You, of course, have that decision to make for yourself. My thinking, though, is that if you take the photos; you don't have to look at them. But if you don't you might wish later that you had. I think your envelope idea is sound.

Sorry to have such a long comment. I'm not so great at being succinct.

12/10/2005 1:11 PM  
Blogger Running2Ks said...

I think that is a beautiful idea--giving her (and yourself) the option to relive, discuss, and heal at a later date.

Annika is a strong and beautiful princess. And you are an amazing mom. Your family's love will provide for and nurture her.

My prayers, as always, are with you.

12/10/2005 2:15 PM  
Anonymous Marisa said...

Moreena, if this helps, I wish there were more picture of me from transplant even though I didn't want them taken at the time.

HUGS!

Marisa

12/10/2005 2:40 PM  
Anonymous Emma said...

As always I am praying and I have asked the people who read my blog to pray too. In a way I wish I had photos from when I had my surgeries for my CP and documenting all of the hardwork I faced after them to learn to walk again. But, Anni will have your journal and your works are worth so much more and capture more than photos could. (((hugs)))

12/10/2005 2:55 PM  
Anonymous Anonymous said...

You're a mom, and thus you'll do the absolute right thing for your Annika...no matter what. Still praying.......often.

12/10/2005 5:35 PM  
Blogger Yankee T said...

what anon said...you will make the decision that is right for you. I have faith.

12/10/2005 6:43 PM  
Anonymous Anonymous said...

I really just don't know what to say except how strong you must be.I hope that annika gets better soon ,we will continue to pray for only the best outcome. as far as the picture goes we have a few of logan after his transplant that the hospital took so that i could see how he was doing. I am sad and happy looking at that pictures and one day i hope that logan will look back at these and realize what a miracle he truelly is i hope this helps a little. And i just wanted to say what a really lucky little girl she is to have a mom who so deeply loves her. tabitha logans mom

12/10/2005 7:41 PM  
Anonymous Anonymous said...

Moreena, my daughter was transplanted at CMH when she was six months old and just under ten pounds (in addition to liver disease, she was two months premature). We took a few photos of her after both her first surgery and her transplant. The collection includes her PICU stay as well as her time on the floor. We keep them in a special place and will pull them out every once in a while. It took us a long time to look at them. Each time we do, it brings back a flood of memories, both positive and negative. There were days I thought I would never forget every detail of her stay, but now they serve as a reminder of how far she has come (and believe me, during the whole experience, we could never imagine life this far out from transplant... we were simply trying to get through each hour). Now that Caroline is five, she asks to see them. She is curious about her incisions, her scars from the many JP drains, and central lines. We included some of the staff in them as well and use them to tell her stories about those who worked so hard to save her life; the many acts of kindness, the care and compassion with which they performed their work. Although, at the time, we were unsure we would ever want another reminder of her stay, we are glad we have them. They tell a part of her story, of who she is, of who we are as a family. I hope this helps. Please know that every night Caroline says a prayer for Annika and we hold you all in our thoughts.

Shelley (mom to Caroline, tx'd 3/01)

12/10/2005 8:03 PM  
Anonymous peripateticpolarbear said...

You've taken a picture with your words.
If you feel you must take the pictures, take them. Take them with a disposable camera and only develop them if you feel like you need to. That way, you're not forced into a decision until you're ready.

I'm leading worship at the big house tomorrow. You're in my prayers already and tomorrow you'll be in theirs, too. hang in there, you are an inspiring mother.

12/10/2005 9:34 PM  
Blogger Shelli said...

I am a newcomer. I came from Running2ks site. I have spent parts of the last several days going back into your entries to find out the background on you and your family. You are an amazing writer. I have been moved, not only by your story, but by your writing on numerous occasions. I have been moved to the point of having difficulty swallowing and wiping the tears from my eyes. I am hoping for the best for you and your family and particularily Annika. God Bless you and your family.

12/10/2005 11:25 PM  
Blogger Sarahlynn said...

As always, PPB has good advice.

We documented Ellie's heart surgery hospital stay with lots of digital pictures. They're posted (with no visible link) on our website, and I occasionally go look at them. We haven't developed many of them.

But there's one picture, taken on her 4th day post-op, that I keep in a frame on the coffee table. It shows Ellie's personality, even at such a time as that. She's tugging on her pulse ox wire while looking up at us. It's . . . perfect: http://www.lesterboal.net/baby/pics/hospital/DCP_2494.JPG

I haven't thought too much about what the pictures will mean to her one day. They mean a great deal to me, though.

http://www.lesterboal.net/baby/

12/11/2005 1:15 AM  
Blogger Bettie Bookish said...

Moreena~

There is one photo of me as a six year old standing in the gardens at Duke University. What the photo doesn't show is the wheelchair my parents used to bring me from my hospital room to the gardens.

I love that photo, because I went through a hellish few years as a sick kid, and that hell can thump around in the attic of your head, so that even as an adult, the echoes keep you up nights.

The photos bring things back to earth. They give you - the adult you - a chance to understand what happened to you - the child you.

More importantly, they place the events of your life into the realm of reality rather than banishing them to the scary recesses of shadowy memory.

I wish I had more pictures.

But, as has already been said here, you have painted an amazing landscape and portrait with your words. Your daughters both have a love story written about them by their mother.

Now there's a gift.

12/11/2005 2:05 AM  
Anonymous Anonymous said...

Mark has just come home from hospital. He had an intestinal bleeding caused by an unexpected lack of vitamin K. He has been in ICU for one week.
We think of you and Annika and the rest of your family!
Dagmar, mom to Mark, 2,5 years, Alagilles Syndrome

12/11/2005 3:56 AM  
Blogger Moreena said...

Wow.
These have been the best comments. Ever. Thank you so much for sharing your experiences with photos, both of your children and yourselves as children dealing with an illness.

And thanks, as always, for the prayers and good thoughts.

12/11/2005 9:06 AM  
Anonymous Lucetta, Mum to Angus said...

Your words bring tears to my eyes. - not of sorrow alone, but understanding, to an extent. I did and do take photos, but I keep them in a seperate album, for when Angus is ready/interested. They are to show him how far he has come, and how loved he was every step of the way.

All my prayers are with you.

12/11/2005 1:20 PM  
Anonymous Anonymous said...

Moreena, I want to add this to the discussion about pictures. Mark has not had a transplant yet. But what I do is collecting photos of other children and adults with Alagilles Syndrome. This disease is very rare and I have heard from other teenagers that they can feel alone and think they are the only "abnormal" child with that sickness. So I collect these pictures in a separated album. If Mark will ask later if he is the only child with AGS I will show him the album.

Dagmar

12/12/2005 1:36 AM  

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