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”:
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.
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?