Friday, August 14, 2009

Calling All Angels

Both of my parents were teachers. My dad taught history, and my mom's love was music. My dad's dad was superintendent of schools and coach to the all-state football team on which my dad played. I grew up "knowing" I would be a teacher: It seemed to be the only path. So when I was in high school I took some classes that were meant to prep young teachers-to-be and, more importantly, solidify our commitment to the field. My senior year I had a half day of traditional classes and spent the after lunch hours as a teacher's aid at the Special Education Learning Facility because I was going to change the world, one learning disability at a time.

First of all, like most of my retail career, the training for this gig was nonexistent, what I would categorize as sink or swim. I truly believe that a great deal of the experience was so traumatic to me that I blanked it out, but I will tell as much as I can remember. One thing that I never expected, however I have since then learned to be the norm, is that all of these children were lumped into one classroom, regardless of their cognitive abilities and perceived future. I think they were all about 7 years old, and their diagnoses ran everywhere from hearing impaired to Down's Syndrome to autism to some things that were terminal, and they actually passed away during my short tenure there.

We had a routine that we followed every day like clock work. I remember all of the kids sitting around a long table and writing out their ABC's. Although they did this task every day without fail, some could not grasp it. Some were quite good and made it all of the way through with only some dyslexic B's and P's. Any small achievements were rewarded, and I am sad to say, lack of achievement was ridiculed. Before the buses came to pick them up, I was in charge of story time. Twenty special kids huddled around me on the floor as I read to them and took them to a place where prejudice didn't exist. After my story we would sing songs, and every kid in there could sign the words to every song. The majority of these children did not need sign language to communicate, but their music teacher had incorporated it into the curriculum to help the deaf children participate. I found this completely amazing! How could one write the alphabet day after day and never get better at it but, on the other hand, learn such an intricate way of communicating with such ease?

In the end I left the Special Education Learning Facility with a bad taste in my mouth. I often overheard the teachers making fun of the children and calling them stupid. It completely broke my heart. When I confronted them about what I felt was cruel and inappropriate, they told me that it was the only way they could keep their sanity and told me that I would understand if I continued my career path. I chose to abandon their shallow, cowardly selves, my career path, and unfortunately, the children. It was more than this 17 year-old could take. I went on to college, changed my major to French and International Economics, and never looked back.

Twenty-two years later I was happily married and pursuing my dream of mommyhood, not knowing that the rug was about to be pulled out from under us. When our NT scan came back a bit suspicious, I took solace in the fact that our baby showed no physical signs of a chromosome disorder and signed up for the amnio to put my mind at ease. The day of the amnio we learned that our"little girl" was, in fact, a little man. "Really, a penis? Are you sure?" The ultrasound tech pointed to a blob on the screen that was in some way supposed to reveal to me the sex of our child. I suddenly felt a strange rush, not unlike how I feel at work when I am given a project that is a bit overwhelming. A challenge. A little boy. See I don't know anything about them. I am an only child as was my mother. My father passed away when I was three, so I have been raised by all women with the exception of two amazing grandfathers. I never even babysat little boys. I know nothing of that skill that involves changing a diaper without getting squirted in the face. Three days later, Pierce had the dubious task of informing me that my "challenge" was about to catapult me into a different dimension: Little Boy Sunshine has Down's Syndrome.

The day started with a routine visit to the OB/GYN to pee in a cup, give some blood, and hear his heartbeat (a sound that never gets old). Pierce and I left the office, and as we were walking to the car he noticed that he had a voicemail. It was the high risk doctor asking him to return his call at our convenience. I had 15 minutes to spare, so I felt sure that he could call, get the reassuring news that the baby was fine, and I could still make it to work on time. Then the phone games began. Apparently, the moron receptionist at the doctor's office had set the phone to go straight to voice mail. This continued for three hours. I went to work. I received the call around 2:30, contacted my boss, and left as quickly as my shaking legs would carry me.

And now we grieve the loss of what we thought would be and face an uncertain future. Oddly it feels a bit like the day I moved out of my ex husband's house, nearly 6 years ago. At least now I have a wonderful husband to pick me up when I fall flat on my face. Now begins a battery of tests and many specialists who will work to make sure this little life is as good as it possibly can be. In my desperate research yesterday I uncovered a fact that made my blood run cold: 92% of all pregnancies with Down's babies are terminated. 92 is HUGE! Don't get me wrong: I am not about to get on some soap box, blasting abortion and a woman's right to choose. I do believe these are personal decisions, and I have never faulted anyone for the choices they have felt they needed to make. But really....if I were 92% of the population this little guy would never take a breath in the outside world, would never know how much his mommy and daddy love him, would never be given the opportunities that "normal" duo chromosome children are given. Is the whole world just sitting back and waiting to laugh at him and call him stupid?

I have had 16 hours, not nearly long enough, to digest all of this. I have questioned my decisions to pursue having a child through IVF and putting us all through so much. I have questioned my decision in college to become a smoker and regretted how long that habit stayed part of my life. I have questioned whether my thyroid was well enough under control when we conceived, and if there was more we could have done. I have wondered if Baby Boy Sunshine's twin had Down's too. And if our snowbaby has the same disorder. I have also wondered how 3 beautiful blastocysts that the embryologist had deemed, "the most perfect I have ever seen" could be imperfect little people by society's standards. Dr. Google has taken away some of the pressure and assured me that my lifestyle did nothing to contribute to this situation. It is a completely random occurrence that presents itself more frequently in women of advanced maternal age (35+).

As we continue to sort through all of this and cope in the only ways we know how, I remind myself that we are still being blessed with a child, a miracle from God. He may not be just like so many other children, but he is our miracle and God is giving him to us for a reason. If he wasn't meant to come in to this world, he would have passed with his sister and his heart wouldn't be so strong. He is so strong, and I must learn to be as well. One of my dear Nestie friends sent me the most beautiful piece last night that really helped put things in perspective. I love her for thinking to send it to me. I hope you all enjoy it as much.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by Emily Kingsley
written about having a child with DS.

Monday, August 10, 2009

Amnio Anxiety

I tossed and turned for two hours this morning before finally crawling out of bed. In those two hours I rubbed my slowly growing belly, prayed (maybe more like begged) for our baby's health and safety, listened to the little snores and soft grumblings of Pierce as he slept, and scolded the cat for getting a little too curious about my glass of water on the nightstand. It's 6AM, and I feel like I have had a full day already!

I actually fell asleep easily last night, and I remember thinking that I was remarkably calm about today's appointment. I guess I just needed a little nap before I woke up and realized that today is THE DAY. I keep focusing on the fact that today we will know if Baby Sunshine is a girl or a boy, and that is so exciting! Somehow in focusing on this I am able to forget about the large needle in my belly, the 1 in 300 chance of miscarriage, and the daunting wait for the lab results. I keep reminding myself that women do this every day, and things are completely fine. The doctor himself said that she appeared to be fine on the ultrasound. I have to believe that God would not have allowed this pregnancy to progress this far if there was anything wrong with Baby Sunshine. We lost Baby B (we have decided to name her Savannah), and I believe that she most likely did have some sort of abnormality or she would be growing along with her sibling. Of course I have no way of knowing for sure, but this is the only way I can keep my sanity through this scary time.

I will give the report in a few days when I am allowed to be mobile again. Our appointment is in 2 hours, and then it is off to 48 hours of bed rest. I need to catch up on my reading anyway.