I’m not proud of how hard it was for me to come to terms with Lanie having Down syndrome but I think it is important for me to be as honest as possible about how it felt because, from what I’ve read, I’m not alone in how I have processed my feelings and I want other people to know this is normal. Yes, some people are able to take it all in right away and that is amazing. But some of us take a little more time and some of us need a little more patience and some of us need somebody to drag us along by our hair.
For me, I stayed in a state of pseudo-denial for a long time. I guess it’s time to fess up to my uncanny ability to put stuff in a box labeled to-deal-with-later, stick it on an imaginary shelf, and ignore it.
This, my story of denial, has nothing to do with how much I love Lanie and it has not affected how I have bonded with her. As a matter of fact, it was (is) my love for her that got me to where I am now and where I am now is a very good place. I may do another post later about why I think a Down syndrome diagnosis is so difficult for some people to accept if I can wrap my mind around how to word it. But the why isn’t what this post is about. This post is about how it felt.
We were informed that Lanie would very likely be born with Down syndrome a few days after Christmas last year when I was 25 weeks pregnant. Rabbit couldn’t be with me at that appointment and I was all alone receiving the results of the screening test. As the geneticist stumbled through delivering the results, not really sure how to explain them, I sat there and pretended like she was reading me a grocery list because I didn’t know what else to do. If I had shown any emotion I’d have had to admit that something wasn’t right and I wasn’t ready to admit my child might have Down syndrome. I’m so sad, looking back, to see that I wouldn’t be ready for that for a long time.
I think this was the reason I chose not to proceed with a diagnostic test to know for sure.
I wasn’t ready.
Every time we had an appointment the perinatologists and my obstetrician would always remind me with long faces that Lanie had Down syndrome. I decided to ignore it. Even though her ultrasounds showed markers for Down syndrome. Even though the screening showed high risk. Even though in my heart I knew…
I wasn’t ready.
After Lanie was born they labeled her a Downs baby. I reminded every doctor that she had not been diagnosed. And when they wanted to take blood to officially diagnose her I blew it off, reasoning that she’d been through so much poking and prodding already and I would wait until she was a couple of weeks old.
Because I wasn’t ready.
At 10 days old we went in to have her blood drawn to test her thyroid and diagnose Down syndrome. After poking at her without success for what seemed like an eternity I stopped them because she was just lying there staring into space. No crying. No reaction at all. It broke my heart to pieces to watch her have zero response. And I knew. Even though they didn’t get enough blood to test for Down syndrome. I just knew.
But I still wasn’t ready.
A few weeks later they sent in another blood draw and I was relieved when it was not enough blood again because even though the results came back as consistent with trisomy 21, I was able to brush it off because the blood sample wasn’t large enough so the results may not be accurate.
Would I ever be ready?
It was at Lanie’s 4 month appointment that her Pediatrician told me that Lanie did have Down syndrome. She wasn’t trying to convince me because I’d never actually outright denied it. It was just the way she said it while picking Lanie up off the exam table and snuggling her. Like it wasn’t this huge deal. It just was what it was and it was okay and suddenly I was ready.
I don’t know why it took me so long to admit to myself that she does have Down syndrome and to be okay talking about it with my friends and, even more importantly, my family. It seemed like overnight I came to accept that this was a part of her and I realized that it was a part of her that I loved and had loved from the start. Her sweet little starfish hands, her adorable sandal gapped toes, and her ears… the cutest ears.
Sometimes I feel like those 4 months were wasted being afraid of something that, as it would turn out, is not the least bit scary at all. Other times I think maybe that time of denial was necessary for me because there were other things she had going on and her medical issues were far more concerning than the actual extra chromosome that was causing them.
I don’t know that I’ll ever have the answer to that but I do know this.
Everything she is was planned.
God created her and loved her before I ever knew of her existence. She is not an accident and not something to fear.
She is not a mistake.
No child with Down syndrome is.
No child is.
And when I look at Lanie…
…I feel joy.
My friend, Marty, took some of these pictures. The one at the top and the last three are all thanks to Marty’s photography skills. Kait gets credit for the one in the hospital.
If you want to participate in the 10th annual 31 for 21 grab the button on my sidebar. Big Blueberry Eyes is hosting it and you can start anytime in October so don’t worry if you’re late. You don’t have to have a child with Down syndrome to participate. You don’t even have to know a person with Down syndrome to participate. Really, you don’t even have to write about Down syndrome. Just write every day in October and dedicate it to 31 for 21. And grab the button and put it somewhere on your blog or your Facebook or tweet it or Instagram it or anything really.