Saturday, March 19, 2005

coming to terms

Some rambling thoughts. Feel free to ramble yourself.

I love the wisdom of the piece "Welcome to Holland" by Emily Perl Kingsley. But some days I have trouble believing the message of this wonderful parable, the assertion that "Holland" is just a different place than "Italy." Not only not a worse place to be, but even a place with its own attractions.
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How can it not be worse that every illness that comes her way could put her in the hospital? And usually does? How can it not be worse that she has to take medicine 5 times a day with listed side-effects that leave me queasy? How can it not be worse that after two transplants, her liver is still a major health issue? How can it not be worse that transplant #3 looms threateningly at some uncertain future point? How can it not be worse that she has to undergo CTs every 3 months to monitor the lymph nodes that have massed like little soldiers throughout her neck and abdomen, ready to rush forward into a full blown lymphoma battle at some secret signal from her confused immune system? How can that not be worse than normal?

And be sure here, that my question is not "How could it be worse?" We have seen that the spectrum of childhood suffering is alarmingly broad, and I know my daughter, Annika, has not experienced its very lowest points. My question is, how could this life she's been forced into not be worse than a normal life? A life without major medical issues advertised on a little silver bracelet worn around her tiny wrist?

I confess I have really been trying to work this through, mulling it like a little puzzle. Like a philosophical essay that I've read and suspect that I really like, but secretly don't really understand. How do you finally decide that you are just in "a different place," but stop regretting the change of flight plans?

The answer that is suggested in the Holland parable is that you have to begin to notice the great things that are peculiar to Holland--the tulips, the windmills, the Rembrandts. But, really, this is easier done in the metaphorical case of an unplanned vacation to a fabulous European country. In Holland, you can point to physical things and say to yourself, "This is here. This is good. And it is not in Italy." But with my daughter, can't I just imagine her healthy? And wouldn't she be the same sweet, loveable girl? Just with fewer scars? And fewer tears? Wouldn't she be happier?

But maybe she wouldn't be--neither happier, nor the exact same girl. It's like trying to imagine how you would be if you were rich. The fantasy, of course, being that you would be the same person with the same values, only with a lot fewer worries. I recently spotted a poem by A.R. Ammons in the backlog of my New Yorker magazines that opened with, "The poverty of having everything is wanting nothing." My first reaction being, "Whatever. Oh, for those problems." I nevertheless read the poem through, following along its evocation of a vacuous wraith wandering the Mall of America listlessly. It seems a tired idea to me that an improvement in your situation will also lead inevitably to a detriment elsewhere. Or the flip side of this kind of thinking--Nietzsche's overblown "Whatever does not kill me makes me stronger."

But, still, if our firstborn would have entered the world with not only 10 fingers and toes, but also a working liver, would we have had the same little girl? Is my yearning to have an Annika who was never a little jaundice-yellow baby, who never toyed with the I.V.s in her arms, or wore a stethoscope like a fashion headband, or cried when her nurses sang "Happy Birthday," or pointed to the huge scar on her belly and murmured, "This is my life, right here..." completely unrealistic? If we subtracted those things, and all the other million little things about our girl that are the direct result of her experiences as a child born with a dying liver, would we no longer have Our Annika? Would she be a completely different child, without the experiences she has gone through? If that's the conclusion I would have to reach, then I could never again wish for things to have been different. Our Annika is the light of our mornings and the warmth of our summers.

But suppose that we had never even gotten to know and love our real-life Annika, and had instead given birth to the liver-disease-free Annika, the Italian Annika. Of course, we would have loved that Annika, too. But would our lives have then been easier? Better, even? Or are there aspects of this life in Holland, enjoyable ones, that we would never have experienced in Italy? Do we enjoy our good days just a bit more? Take the healthy and happy days a bit less for granted? Does Annika have some spark, the forward momentum of wanting, that she would otherwise lack? Does the fact that our daughter's life was saved by strangers in the midst of their own tragedy connect us a bit more closely to all the unknown human beings we pass in the world each day?

In the end, I think the only way to take "Welcome to Holland" is not so much as a description of how our lives actually are, as an inspiration for how we should live them. Without regret for how we might have been, and actively searching out the landmarks and accomplishments that make life here worthwhile, and perhaps even sometimes enviable.


Blogger none said...

I see Holland as a very bittersweet place, where the highs are exhilarating and the lows are heartbreaking.

Yet Holland is the only country I´ve been, where the tourists are so kind and caring to one another. When one falls, another total starnger will rush to pick him up. You´ll rarely see that in Italy.

One would think that the people would be so sucked in by their own pain, that they would hardly have strength to offer anything to those around them.

And while this and the many other miracles found here never take away the pain entirely, they make it bearable sometimes, and somehow it gets us through another day.

As depression very slowely but progressively gives way to acceptance of my personal situation, I still feel sad and wish "it weren´t so" for the other travelers I see.

Which brings us back to the eternal question "Well isn´t Italy better than Holland?"

I´ll never know. All I can do is, just like you wisely said: Live...Without regret for how we might have been, and actively searching out the landmarks and accomplishments that make life here worthwhile, and perhaps even enviable.Annika is in my thoughts and prayers.

5:54 AM  
Blogger Moreena said...

That is beautifully put, Ciara. And you are so right that the caring thoughtfulness of others here, even across all sorts of political and religious differences, is a definite positive in our lives.

7:40 AM  
Blogger Sarahlynn said...

"In the end, I need to remember that "Welcome to Holland" is not so much a description of how our lives actually are, as a reminder of how we should live them."

Yes! I think that's it. It's still much easier said than done.

Ellie's pediatrician has a little girl with Down syndrome. We met with her while I was still pregnant, and she told me that whie of course she mourned at first, after about 2 weeks she found the place where if she could change things - if she could remove the extra 21st chromosome from each of her daughter's cells - she wouldn't do it.

I don't think I'll ever get to that place. If I could magically fix Ellie - remove the extra chromosome - I'd do it. She might be a slightly different little girl. But I'm sure she'd still be sweet and I'm sure that I'd still love her madly and I'm sure that we'd have fewer health issues and things would just be easier.

9:02 PM  
Blogger Jay said...

Beautiful post about a beautiful story.

Your daughter is who she is because of the things she's been through, and at the end of the day, I guess you're just lucky to have her in way you can, because she is special, and she is great just the way she is. The best to hope for is that this Annika will take what has been given to her, and be healthier (much) in the future.

But the 'what ifs' of life are always enticing...even if we know we should be perfectly happy with what we have.

10:52 PM  
Anonymous paul said...

I am speaking as a father of a developmentally delayed child.

If you put your life on a ledger, and put your child's disability and all of the baggages that come along with it on the minus side, you might as well quit now and go home. To know that the one thing you love above all is somehow irrepairably damaged is to know true sense of loss. Thankfully, life is not accounting. That is why someone in a third world country with nothing more than a small plot of land and clothes on his back may be infinitely richer than a man with immense wealth driving a big fancy car and living in a trophy house.

If I compare my son to another, typical child, and count all the things he can't and won't be able to do, it can be discouraging. But if I take him as he is, without a point of reference, he is darn near perfect.

I also realize that my life is that much closer to perfection in all of its irregularities. My life is certainly richer and more meaningful because of my son. There are many night when I can't hold back my tears as I look into his face as he is sleeping in my lap, not because of sadness, but because of overwhelming love. I don't think I would have been capable of such depth before my son. I honestly believe that my son has brought depth and sense of purpose into my life that a typical child never could.

I don't mean to say that somehow my son's disability is a fortunate event or a blessing. It isn't. Infact, it may be terribly unfair as he grows older and becomes self aware and realize that he has limitations that others don't. But that's life, it gives and it takes. But the capacity for happiness and fullfillment is largely within ourselves, and having a child with a disability does not diminish that capacity in any way.

By the way, this is a wonderful site and I enjoy every entry!

3:54 PM  
Blogger Moreena said...

Yes, I know exactly what you mean. I am always amazed when I go back and reread the Welcome to Holland essay and see how she sets it up as an attempt to "describe the experience of raising a child with a disability..."

It seems that she has done a lot of zen-like "letting go" in order to describe life this way. I think my trying to write about it is also my way to try to see my way to that place myself, although, like you, it's hard for me to see a time when I can stop the constant comparison to that alternate reality over there in Italy.

By the way, your "Sliding Doors" post really got me thinking along these lines a few days ago...

9:45 PM  
Blogger Moreena said...

Thanks for commenting. You make some very wise points. I think you are further along on the acceptance scale than I am!

By the way, we are an open community, so if you'd like to contribute something, just drop me a line. Writing it all out can feel like letting go of a big breath sometimes.

9:46 PM  

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