Normal

When I was pregnant with my first child, Shaila, I had no idea what pregnancy would be like. My symptoms didn’t seem to fit the bill for what most of my friends went through.

For example, instead of gaining weight, I lost it. The day she was delivered, I actually weighed less than I weigh today.

I fainted frequently. Once on a plane going to a business conference. They almost landed the plane for me because they thought I needed immediate medical attention. I assured them that they didn’t need to, so they booted out the people sitting in my row so I could lie down. Little kids would come up to me and poke me to make sure I wasn’t dead.

I couldn’t walk straight for months and without pain. I heard about things like – ok – this is embarrassing – hemorrhoids - and stuff – but I mean, this was ridiculous. I could have sat in a vat of Preparation H and I would still have been miserable.

I STILL think I walk a little funny.

But no matter what, I remember the excitement. The anticipation. Getting excited for my visits with my doctor and the ultrasounds. My god, the ultrasounds. Could there be anything more exciting than getting your belly lubed up to see that amazing little heartbeat? To see the flutter of tiny feet?

I liked my Doctor well enough, but I felt like her nursing staff was pretty cold. I know that they have been through and seen all of this a million times, but for a first time mother, it’s all new. I even remember asking the nurse if there was a special way I should pee in the cup. You know – something different I should know about. She looked at me like I was speaking another language and ignored me.

And maybe I did ask some stupid questions. I think John did too. We just weren’t prepared and those appointments felt like a lifeline to the child we hadn’t yet met.

I remember when they did my blood screening to test me for any indication of Down Syndrome. No biggie, I thought.

Just another test.

I received a call a few days later. I was in a meeting at the office so I let it go to voicemail. When I came back to check the message, I found there was a message from a nurse from the office. This is what I heard:

“Hi, Mrs. Fer-nan-dee-nez.” It’s Ferrandino, people. Ferrandino.

“We’re just calling you to let you know that your test for Down Syndrome came back abnormal. Call us back so we can schedule an ultrasound. Have a great day!”

My heart started pounding and I went into a panic. What does this mean I thought? I settled into a private office and called the office back. When the nurse got on the line, she told me in a dry voice – very dry – that yes, my tests were abnormal, but that they could get me in for an ultrasound in ten days.

Me: But what does abnormal mean?

Nurse: Your numbers came back higher than normal.

Me: How much higher?

She gave me some numbers which basically could have been Greek to me. I told her I needed to talk to a Doctor right away. Like ASAP or this bitch (me) was gonna go apeshit on them.

When a Doctor from the practice called me, she gave me more information. She also explained that they like to verify early to give the mother a chance to decide whether to keep the child or terminate in the event that Down or something more serious is confirmed.

I remember being in a daze and crying and calling John and us being in shock. When I called my brother, who is a Doctor, he kind of calmed me down – he explained that the test puts out a large umbrella and there was a high likelihood that my child would not have Down Syndrome. That relieved me. My child could be normal.

But of course, I didn’t go home and just relax. I went on boards for parents of children with Down Syndrome. I read their stories. I cried. I cried for them. Not just tears of sadness, but of happiness – because all of these parents loved their children like crazy. Because you got the sense that each of the families with a Down Syndrome child seemed to take it more as a blessing – that they had been chosen for this for a purpose.

To love that child uniquely. As only they could.

When John and I discussed what we would do if further tests came back positive, we both agreed we would want to keep the baby. That we would want that baby no matter what and we would re-define what normal was going to be.

It ultimately did not come down to that. Shaila did not show any markers during the ultrasound. When I was pregnant with Nico I told them I did NOT want the test. That it would not change my decision.

This year, one of my best friends in the world welcomed a beautiful baby girl into her family’s life. The baby is beautiful. She is perfect.

She has Down Syndrome.

She does have some health complications that need to be addressed and until she is fully stabilized, I don’t think my friend and her husband will get much rest. They both work full time, have a two year old in tow and are in and out of the hospital for procedures. Right now, life is really, really hard.

But they are blessed. And the baby is blessed to be born into that wonderful family.

Nobody is making light of the challenges that lie ahead. Nobody is that naive. But my friends will do whatever they can to make sure that baby loves her life. And while she is blessed to have them, they are equally blessed to have her. Because she will also make sure that they love their lives too.

As John Franklin Stevens, a Special Olympics athlete, so eloquently said in response to Ann Coulter’s hateful tweet the other night in which she referred to President Barack Obama as a “retard”:

“…Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.”

In speaking and hearing stories from mothers of childrens with Down Syndrome, both joy and loss are felt at the same time. The love for that baby in your arms. But the loss of certain expectations of the kind of life that baby will now lead.

One of the hardest things I think parents of children with special needs have said they deal with is fear of how their child will be treated. And you think to yourself, maybe kids can be cruel, right? But over time, through education, people learn and understand and appreciate and love. Isn’t that what growing up is about? Overcoming ignorance?

But when you see dumb shit like this?

You realize that ignorance knows no bounds. And ignorance has a voice. A very loud one.

I received some criticism of the letter I wrote to Ann Coulter yesterday (which I am sure she is just continually mulling over). Some said that I was TOO nice. But a few asked if I was just as bad as Ann Coulter in mocking her.

I don’t know. Am I?

Perhaps I am. And if that’s the case, I apologize.

Oh, who am I kidding? NAH. She is like the spawn of Satan, people. For anyone who said my letter is as bad as half the shit that comes out of her mouth, get a freaking reality check.

I know that you cannot fight hatred with more hatred. Gandhi and Martin Luther King and Henry David Thoreau all taught me that.

But for now the thing that’s first and foremost in my mind is that she owes people an apology. President Obama can take care of himself. But for the individuals and families who deal with the challenges of special needs EVERY DAY, she most certainly should be apologizing.

One thing I have learned is that there is no normal. Parents and families will love their kids no matter what – and normal is redefined for every family every day.

Ok. I will stop writing about her now. I am done. My lips are sealed. I will not mention her name on this blog again. PROMISE.

Until the next time she says something horrifying.

Which, gosh. Could be any day?

Ah well.

Kiran

23 Responses to Normal

  • You wrote this very, very well. I think Ann Coulter might have irreparably damaged herself with this one.

  • Laura
    Twitter:
    says:

    Such an incredibly poignant post. I too had a similar pregnancy “scare” during my first pregnancy. An ultrasound came back with a soft marker for downs. We were sent back for a closer look. But between getting that phone call and getting the results from the second ultrasound, my heart was broken. In my heart, I knew my baby was perfect. But what if he had Downs? If he did, the rest of the world would not see his perfection. And picturing his life before it even really began, picturing people saying things like Ann Coulter said, that killed me inside.

    My son is beautiful and “normal”. But if he didn’t fit into society’s standard’s of “normal”, he would still be beautiful, still be perfect, still be worthy to live in this world.

    Thank you for writing this. It needs to be said. I hope that some day, the “R” word will cease to be used as an insult.

    • Masala Chica says:

      I think it will. I mean, just like there are people who still throw the “n” word around, there will be some who never move beyond that ignorance. But I think as a society, we are more empathetic than we have been in the past. Perhaps because our awareness of autism and other special needs have made us realize how brave the children and the families are who overcome hurdles every day. She doesn’t represent many. That’s my hope.

      Thanks for your beautiful comment, Laura.

  • Heather says:

    I was incredibly stunned to hear that she tweeted that. I just don’t understand how someone who people look up to as an influencer can be so ignorant. And I think you are right, don’t give her anymore time. She doesn’t deserve it.

  • bocafrau says:

    Kiran, first thanks for stopping by my humble blog home and second… wow. Loved reading this… just beautiful.

  • Venassa
    Twitter:
    says:

    I had no clue who she was until this tweet came out, and I wish I still didn’t know. She sounds like a rotten person.

    This was beautifully written. I hate that ‘r’ word so much.

  • Emily says:

    This was beautiful. Powerful. And somehow, I hadn’t heard about Anne Coulter’s tweet until I read this post. I’m so glad you’re taking a stand.

  • Such a great post! I can’t imagine how you felt hearing those test results. Though I know you would have loved your child no matter what, who doesn’t want an easier life for their children?

    I read your letter yesterday and am now curious to see what criticism you got!

    • Masala Chica says:

      I sent you some screen shots. Basically the gist was that I am no better than her and that I am a hypocrite because I make fun of her being skinny and all that.

      I guess I will just have to bear that title, “Kiran – as bad as Ann Coulter.” – It has such a ring to it!

  • What a touching, illuminating post. I especially loved these lines: “But my friends will do whatever they can to make sure that baby loves her life. And while she is blessed to have them, they are equally blessed to have her. Because she will also make sure that they love their lives too.” Whatever our struggles, I am so blessed to have my two little miracles in my life. Thank you for the reminder.

  • The Dose of Reality says:

    Beautifully, beautifully written. I could not agree more with every sentiment you expressed. Just lovely.
    I also read your letter to Ann Coulter and, if you ask me, I think you showed an ENORMOUS amount of restraint in your words!!!

    • Masala Chica says:

      Thanks you SOOO much. I felt bad – an old acquaintance from High School said in a public post on facebook that I was just as petty as Ann Coulter – no better than her actually – for making fun of her skinny blonde form – that it was the same as calling her the “r” word. I was shocked and hurt, but you know what? If you write a blog, you have to take the good with the bad and that’s OK, i guess.

      See, I am over it? (ok, not, but trying ;-))

      Kiran

      P.S. Thank you for visiting!

  • Beautifully written post, even if it only changes one persons opinion you have made a difference!

  • I had the EXACT same experience with my second child that you had with the AFP testing. I felt like I was reading my own diary for the first third of your post. My hope for AC is that she learns something from the backlash. It’s all I can hope. Ignorance has a cure – it’s experience, so I try to be positive that people have the ability to learn and grow, even the AC’s of the world ;). If you haven’t read Martha Beck’s novel “Expecting Adam,” it’s a must-read memoir about her pregnancy with her son Adam, who has Downs Syndrome. Beautiful book.

  • Beautiful story, love reading your thoughts. Thanks for the comment on my dust-gathering blog. You family and your blog are lovely! Best wishes.

  • meganbestoffates says:

    Wow, those nurses really need a lesson in how to deliver surprising news! And I love that quote from Mr. Stevens – so beautiful!

  • Alison
    Twitter:
    says:

    When I was pregnant with #2, and being 36 (right on the cusp of ‘advanced maternal age’), my doctor asked me if I wanted the test. I asked him what he thought. He gently reminded me that it’s my choice, and asked if this baby does have Downs, would I keep him/ her?

    Without hesitation, I said yes.

    He nodded at me understandingly and said, then you have your answer.

    I didn’t take the test.

    Also, that letter written by Mr. Stevens? Astounding. Such grace and aplomb. Unlike some asshats (yes, my favorite word).

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MEET KIRAN
I'm Kiran, I'm a dreamer. A writer. A singer. A mother. An ugly crier. An Indian-American. Who loves Gandhi. My stories are full of truth that is sometimes hard for me to say out loud. This blog is where I overcome my fears and live (and love) out loud. Read More....
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