When I first got the news that Taeya has Down syndrome, I was 5 months pregnant. I remember the day like it was yesaterday. At the same time, much has faded. The sonographer was scanning my tummy and being predictably stoic. I remember asking him if he was able see her heart - the reason I was sent to Maternal Fetal Medicine to begin with. There has been a "shadow" on her heart and I needed more evaluation.
In my heart I knew everything would be alright. I also, somewhere deep inside me, knew something was not so right.
The sonographer told me that reading a scan is as good as seeing one side of a house being painted. "What?", I thought. "Is he crazy? I'm a mom with a 5 month old fetus kicking around in me. Surely you see something". So in my creativity I asked what the side of the house being painted looked like. I think I threw him off. At that, he responded by saying there were "things that concerned him".
He left the room in a bit of a rush and returned just as quickly as he had left, with a kind looking, nicely dressed woman, and another woman in a white lab coat. They didn't waste any time. They introcuded themselves as the Materal Fetal Medicine doc and the genetic counselor.
"What? Why do I need a genetic counselor. There's nothing wrong. Nothing is wrong with my other kids. Nothing can be wrong with this one". I was half pleading for some mercy in the midst of my world crashing in on me.
"Well, your baby has a shortened nasal bone", the doc said.
"So"? I mean, really, my nose isn't huge for heaven's sake.
"And she has what's called an AVSD. It's a valve defect". I later learned that was a huge understatement. It wasn't a defect. It can't be a defect where there are no valves at all.
"So what exactly does this mean? Is there some link between the nasal bone and the heart defect?", I asked.
"Yes, these are both strong markers for Trisomy 21. Down syndrome", she responded.
"Down syndrome"? How can that be? My other kids don't have Downs". In my mind, even though I knew it wasn't true, the fact that my other children didn't have Downs meant that this little one didn't either.
Then the genetic counselor chimed in. "You are already 5 months along. You have about 48 hours to make a decision".
I was transported, at that moment, to another place altogether. I think there is an emotional room that hovers somewhere in time that people slip away to in the face of news that's too much to process.
"Okay, wait a minute. So you mean that a diagnosis of Down syndrome is so bad that terminating the child's life is a better option", I asked.
"I'm not saying it's better. It's just what many people choose", she replied.
So there I had it.
I ended up having an amnio that day. I didn't want it; I just didn't have the strength to even speak for myself. I remember asked the doctor before I left their office that day if I was selfish for wanting to keep my daugther. She said no, that it was the least selfish decision I could make. I remember being surprised by her comment. Surprised because of the quick offer made by the genetic counselor to terminate my daughter because of her additional little chromosome.
I spent the next four months angry; angry with God, with all those moms that didn't face this, with Maternal Fetal Medicine. But mostly, with myself. What was wrong with me that I could not accept what God chose for me? If any friend had come to me with this circumstance, I would have encouraged them to trust God fully. But for me, I couldn't do it.
I started researching like crazy. I would reach out to the Downs group here and then not return phone calls. I couldn't. It was too much. It meant I had to accept this reality. The Dean at my school has a daughter with Downs. She was the only one I could talk to for months. She would let me look at pictures of her precious little girl, Claire. Some days, while I was in school, I would walk to her office and she'd see me lurking outside her door. She would excuse herself from meetings, calls, trainings, you name it. She'd clear her office, bring me in, shut the door and hand me a box of Kleenex. I don't know what I would have done without her.
I'd call my best friend and rant that I never wanted to be proud of my 4 year old for being able to say "strawberries".
I was a mess.
I came across a poem that all Down syndrome families know. It's called Welcome to Holland. Somehow, it freed me. I began to accept what would become the most wonderful journey of my life. I will post it below.
My daugher has, without a doubt, been one of the greatest blessings in my life. I would not trade her for anything in the world. I would not ask to have her genetics put in any different order. I have found that I am truly the one who is blessed to be chosen to have a daughter so sweet, so precious as this little girl.
Taeya has taught me so many things. She's taught me to accept myself for who I am. That's still a daily struggle, but she's so patient with me. She's taught me that it's okay to go at your own pace. She has also taught me that, as much as she has some developmental delays, I do too.
I am compeletely in love with my daughter. Her Down syndrome doesn't define her. Rather, she helps to define this wonderful world of Down syndrome.
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