31 for 21 - Day 8 - A Hero or Just a Parent

Just have to point out that the blanket Joey is on is made of all the old denim coveralls my
Grandfather wore out on the family ranch in Nebraska.  It's truly a family heirloom.

As the parent of a child who has Down syndrome, you sometimes hear that what you are doing is admirable.  That you must be a special person to have a special baby.  That somehow you were born with more patience, less selfishness than the average person and more understanding.  


That is all hardly true.  Having a child with "special" needs or Down syndrome is nothing any of us ever plan.  When pregnant and asked if we want a boy or a girl, we all smile and say, "It doesn't matter... as long as the baby is healthy."


What we have learned through the past year and a half or so is that "health" is subjective.  That what we "plan" is so rarely what we expect, want or get.  And yet-- what we get is often so much greater and so much more incredible that we would have never even have been wise enough to ask for it.


I remember being pregnant with Joey and being told that he had hydrocephalus, including fluid around his head and body.  That he had a heart condition.  That he had a septated cystic hygroma around his head.  That he would die long before he would ever be born.  That he would be stillborn at best.  Then-- that on top of all this, that he had an extra chromosome- oh by the way-- Down syndrome.


It's a lot to take in at 13 weeks into the pregnancy.  On one hand, we barely had the energy to mourn the diagnosis of Down syndrome.  On the other hand, we were preparing more for a funeral than a birth.  It wasn't until about 28 weeks or so into the pregnancy that Joey showed he was going to be a fighter and that despite all the dire predictions he would make every attempt to make it.  It was much later into the pregnancy that the diagnosis of Down syndrome finally hit us.  We hadn't really dealt with it for so long because we didn't even think he would ever live.


I thought I knew what it meant to be healthy.  I thought that eating right and exercising was what it meant to be healthy.  I thought that because I did "everything" right that having a baby who the world might not see as "healthy" would never happen to me.


That is what drew me into the article by Stacie Lewis called "A Hero or Just a Parent" on Motherlode.  She writes, " I had a normal pregnancy. I took excellent care of myself. It happened to me. The truth is, it can happen to you."


She goes on to say:

I am not the parent of a disabled child out of choice. The phrase “I could never do what you do” surfaces frequently. I didn’t have a choice. When the impulse to run away was strong — and it certainly was — society, my upbringing, Jewish guilt, the pressure I placed on myself, insured I chose May.

The fact that some people in my situation abandon their children does not make me a hero, it makes them jerks.

I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.

To this, I add a final thought.

It will come as a shock to some.

I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.

There are many people in the world who are alone and unhappy. Pity them.

Stacie's child does not have Down syndrome, but her words express what I feel every day-- I am happy.  My life is incredibly fulfilling and in no way am I a hero-- Joey is the hero.


Here is her full article:

October 13, 2010, 10:45 AM

A Hero or Just a Parent?

By LISA BELKIN

During the discussion here last week about the challenges of parenting a disabled child (“Is It Harder to Have a Child with Down Syndrome?”), I heard from Stacie Lewis. An American living in London, Lewis has an 18-month-old daughter named May, who has severe brain damage, caused by lack of oxygen at birth.

Lewis has been blogging about May since the baby was 4 months old, at Mama Lewis and the Amazing Adventures of the Half-Brained Baby. Often her readers leave comments praising her courage and patience — the same kind of comments that many (though hardly all) Motherlode readers left on the Down syndrome post.

Those sort of comments tick Lewis off. She is not some kind of hero, she says, just a mother who drew an unexpectedly complicated hand. And, as she writes in a guest post today, sometimes she gets more than cranky about it.

No Different
By Stacie Lewis
First, apologies. Apologies to all the well-meaning people who don’t know me. You who lend me your support commenting on my blog and at the pharmacy and friend’s parties and all the other places I encounter people with my severely brain-damaged baby. I am apologizing so I don’t offend you. But, I fear, I will end up offending you regardless.

I’m speaking specifically to those who admire me because I’m the parent of a disabled baby.

People are under the mistaken belief that as the parent of a disabled child I deserve admiration. Some, amazingly, even tell me that I’m a “better person” than they are. So, am I more devoted, more loving, more ambitious than other parents? The reality is, I am no different than you, dear reader.

I am no different, and that must be very frightening. I did not do anything to deserve a disabled baby. I did not do anything to be rewarded with her. I had a normal pregnancy. I took excellent care of myself. It happened to me. The truth is, it can happen to you.

This week alone, two doubtlessly kind people commented on my blog. They claimed I was “their hero.” I didn’t do anything to achieve this, certainly nothing heroic, unless, unknown to me, attending May’s physiotherapy appointment has now been elevated in heroic importance.

Not only do I not want to be anyone’s hero, the fact is I’m not any kind of hero. I’m plainly not.

For one, I’m not perfect. I swear. Too much. Often in the company of my daughter.

And I’m lazy. I do a lot with May and for May. But I also like really bad television. Sometimes, I lay May down on her play mat, not to give her time to relax on her own, but because I want to watch “The Gilmore Girls,” which I own on DVD. I’m ashamed to admit I own it and love it and have watched all seven seasons twice. But, I’m not ashamed that I take time to do what I want.

Also, everyone likes a hero, and not everyone is a fan of me. I am determined and persistent. Which is good. Unless you are on the other side of it, and then I am just unappreciative and rude.

When I found out May was brain damaged, my first thoughts were not noble, honorable ones. In those initial weeks, as I began the long and painful process of accepting the situation I found myself in, my desires were selfish ones, including a wild wish to run away. Today, when I cuddle my adorable daughter, I am relieved I did not act on those desires, but that doesn’t mean they didn’t exist.

It was very lonely sitting by May’s incubator. My eyes would be drawn to the cityscape outside her window, a whole world of people going about their business, oblivious to how suddenly life swerves away from normal. My mind would wander through the various nightmare scenarios of my future. Every one was a variation on the two of us, forever trapped in my 2-bed apartment, ensnared by all the wires and tubes and machinery necessary for May’s survival.

We left that nightmare behind at the hospital six weeks after May was born. My visions, of me imprisoned with May, my husband nowhere to be seen, seems absurd compared to our reality. Where is the baby that the doctors thought would be tube-fed for the rest of her life? Smeared from head to toe in peanut butter and jam, jamming her hand in her mouth for more. Where is the baby the doctors thought might never be able to express her emotions? Laughing so hard she can hardly breathe, my husband the comedian causing all the hilarity.

None of this makes me a hero. I didn’t achieve anything in those first weeks or months – she did. I didn’t do anything, certainly nothing heroic.

Even now, I worry about myself and my future. I worry about her too — of course I do – but I refuse to believe that my future is entirely dependent on her condition.

I’m not ashamed; my life is as valuable as hers. I’m not prepared to relinquish mine for hers.

Heroes sacrifice their lives for someone else. I do not. I care for and work with May. I love and adore her. That is not the same as devoting every waking minute of my day to her progress and pleasure, at the sacrifice of all else.

I am not the parent of a disabled child out of choice. The phrase “I could never do what you do” surfaces frequently. I didn’t have a choice. When the impulse to run away was strong — and it certainly was — society, my upbringing, Jewish guilt, the pressure I placed on myself, insured I chose May.

The fact that some people in my situation abandon their children does not make me a hero, it makes them jerks.

I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.

To this, I add a final thought.

It will come as a shock to some.

I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.

There are many people in the world who are alone and unhappy. Pity them.