|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: