A question I have never been asked (at least by those without a child with Down syndrome)–

What was it like to receive the diagnosis that our child will have Down syndrome?

Most of you know me fairly well with regards to my attitude about Lily and Down syndrome. I have been complimented countless times on how strong I am and what a great attitude I have-  and yes I am strong and yes I do have a great attitude. But it wasn’t that way in the beginning……

At our 16 week ultrasound we found out we were having a little girl. Shortly after learning that, we also learned that she most likely had Down syndrome. Shortly after that we had to verbally tell our doctor that we did not want to terminate our daughter. Most know this story- what hardly anyone knows is what happened when we got home.

I don’t remember the drive home. When I got home I crumbled. I could barely walk, I couldn’t think past my emotions. I only knew and understood one thing: I am not killing my daughter- I want her so badly and we tried so hard. Like most people, I have my own personal relationship with God with its ups and downs, some moments more faith-filled than others. On my knees I asked Him, Why me? I don’t deserve this. Why my child? Those questions escalated into more of a How dare you? sort of flair. No need for me to go into more detail here – you all understand. When my declarations to God were over – I decided to do some research.

I will admit – the very first thing I did was google pictures of people with Down syndrome. Looking at some of the photos that popped up and reading about all the problems and especially reading the words, “mentally retarded”– I just died inside. I felt like all the air in the world was gone, someone had punched me in the gut and was now sitting on my chest. The world spun, and I couldn’t hang on- I wanted to wake up from this nightmare. I was trapped in an unfamiliar part of my mind and I was clawing my way back to a reality I had once known but no longer existed. There was no way out, no escape, nothing but unbridled, uncontrollable terror.

I began grieving for the child I thought I was going to have, I grieved for myself. I grieved for the baby I was carrying. I grieved for 3 days. I cried for 3 days. Then the tears dried up and I ended my silent treatment toward God.

I remember sitting and holding my belly and praying to God to let her be okay, let her be okay, let her be okay. I sought refuge in my prayer and comfort in my husband.

Then I forgot all about it. (yep, I really did). I continued on with my pregnancy without much thought toward her maybe having DS.

The day Lily was born was well, wow. The doctor told me right away that she looked like she had Down syndrome. As we waited for the chromosome test, I would stare at her trying to decide if she ‘looked’ like she had Downs or not. Some moments yes, others no. They explained to me the features they saw but it was hard to see.

I was sitting in the NICU when 3 doctors, 2 nurses and a social worker entered our room. Lily was asleep in my arms, I was in heaven.  They told me the results were in and she does in fact have Down syndrome. The tears slid down my face before I could stop them. This time though, it was different. This time I could look at my daughter, feel her, hold her, breathe her in.

I knew God had indeed answered my prayers, she was okay. Almost as soon as the tears began they ended. I no longer cared. I no longer feared. I just felt peaceful- I was a mommy. I had a little girl. She is perfect.