The Living Child treated like Dead

Giving birth is a joyous time for most people.  Everyone is excited.  A new life has come into the world.  The possibilities are endless.  People swoon over all the baby's pictures.  They're filled with compliments. Congratulations are abundant. 

Unless that baby has Down Syndrome.

Your baby's birth is treated like a tragedy.  Well, isn't it a tragedy? I mean, this kid has a disability, right?

NO NO NO!!

People say I'm so sorry.  Everybody is sorry.  Like she was born dead or something.

Trouble is, we had a living breathing female child who was beautiful, and very much alive.  I would say, "Why are you sorry? I'm not sorry."

Then I would get, "well, it's so hard to know what to say."

I tell people, "Say congratulations.  That is what is said when anybody has a baby."

But you could tell, with some people, this concept of congratulating new parents who had just given birth to a child who happened to have an extra chromosome is, well, a big strange.  Like cramming your finger into a light socket strange. It just didn't fit. 

It's not like we didn't get it, to a degree.  We knew Mishayla had a disability.  We knew we had, as the doctors said, "a marathon" to run, that most people would never have to experience.

But it certainly wasn't a tragedy. 

People acted like it just didn't happen.  At the company Tony had been employed at for five years at that time,  there was no mention of our daughter's birth in the company newsletter.  At least three other births were listed for the month of August, 1999.  And they knew we had the baby. 

I would bring pictures to show people.  Pictures I'd taken at UCLA (most of the pictures I showed around to people were posted in a previous blog).  People would look at them, nod their heads, and hand them back.

Not a word.  Like they were looking at a picture of a plant, or a car, or God knows what.

Certainly not a picture of a newborn child. 

If I had to describe to you what this made me feel like, it felt like rejection. Like I had something wrong with me to be touting around these photographs of this newborn, thinking that I had something worthy to show. Like I didn't get it.

What I got was that people needed educating.  That their lack of compassion was shocking. 

And shockingly, the medical community, who should really know better, was one of the worst culprits when it came to this.

We had filled out a birth certificate before leaving the hospital where Mishayla was born.  Mishayla Rose Moore.  Her full legal name.  The certificate said "Live Birth."

But the people at UCLA would not call her by her name.  Stuck to the  front of the little plastic crib Mishayla was in, was the sign "Baby Moore."

This drove me up the wall.  Every morning I would go down to L.A. to see her, and I would say to the nurses, "Mishayla this," or "Mishayla that," when discussing my daughter.  They would come back with things like "Mishayla?" like they didn't even know who I was taking about.

Then the light would shine.  "Oh," they would  say. "You mean Baby Moore?"

It was like they were saying we can't give her a first name because, well, she's sick, and she just might take a turn for the worst.  Why bother giving her a name for that reason? Aren't you just setting yourself up for a lot of heartache?  I guess they presumed it would be easier to bury "Baby Moore," instead of "Mishayla Rose Moore."

As they say in the texting world, "WTF??"

One day I had finally had it.  I asked them to remove the "Baby Moore" sign from her crib.  "I don't want to see that on there anymore," I told them.  "Either put one up with her name on it, or leave it off."

Those of you that have had children in the hospital know the medical community does not generally take well to uppity parents like myself.  They think they know best. 

Nobody knows best when it comes to Mishayla but Tony and me, period.  And once again, to me, it was the same old thing.  If you don't act like this baby is here, she will not be here.

Finally a nurse listened, and did put a sign up on her crib with her name on it.  I asked that it be notated in her chart that she was no longer to be referred to as "Baby Moore."

I hope no other parents goes through what my husband and I did as far as this goes.  But if this does happen to you, stand up!!  Say "This is our baby, and she is perfect!!"

And spread the word. Teach people to say  "Congratulations" at the birth of any baby.  Because all babies, and all parents, deserve it!!

I challenge anyone to say this baby isn't beautiful
Down Syndrome and all!!