Tuesday, October 23, 2012

Daniel's diagnosis story - Part 2

I wrote the following journal entry when I was a little over five weeks pregnant, obviously too early for any sort of screening test. I edited this a little for privacy reasons but otherwise it is exactly as written on that date. Some of what I wrote is not person-first language, but I've preserved it as written to keep it as accurate as possible.

October 18, 2011

Baby Signs

I've kind of hesitated to write about this because I know a number of people reading this don't believe in God, or if they do, they don't believe God can send you signs. But I feel like I need to get it down, so if it ends up happening, other people will know and I won't feel (too) crazy.

I have strange feeling that God is going to give us a special needs baby at some point. I don't know if it'll be this baby. I just want to document some stuff.

A few weeks before we conceived this baby, Joe and I were talking, and I asked him,

"Do you ever feel like God would trust you with a special needs child?" I'd had a weird feeling about it for a few weeks and I wanted to talk to him about it.

A few days after I got the positive test, I was walking Kirby with Lily in the stroller, and we came across another family (mom, two boys of different ages) who were also walking their dog. One of the boys was obviously special needs. He was so sweet though. He asked me about Kirby and about Lily. This is a walk I have taken dozens of times, with and without Kirby/Lily, and I had never met this family before.

Today when I turned on the radio (I usually listen to either EWTN radio or NPR in the car, I'm not into the music on the radio), Mother Angelica's show was on. They were talking about babies who get aborted because of their special needs. I got chills throughout my body when I heard what she was talking about. The show was actually really good.

I have no idea if God is trying to tell me something or not. I realize to some of you I sound a little...crazy. But like I said, I wanted to get this down. If our baby ends up having a disability of some kind, I want to be able to look back and see that God meant it to be that way, and that He has a plan.


I shared this journal entry with a few very close friends and promptly forgot all about it. Mostly. I thought about it a little at my ~20 week ultrasound, and again at my 34 week ultrasound. I remember the ultrasound technician telling me all about how beautiful his heart was, and thinking to myself, "Well, at least it isn't Down syndrome." I think in my heart I knew my child would have a disability...I knew comparatively little about Ds at that point, but I did know that it could involve heart defects. I had no idea how common it is to have perfect ultrasounds, even screening ultrasounds (which we didn't have) and still end up with a sweet baby with an extra chromosome.

The day after Daniel was born my doula Jenny (who also happens to be a midwife) visited us in the hospital. I was still having fears about Daniel, and was still being reassured by Joe. When Jenny arrived, Joe still had not arrived back at the hospital from an errand home to let Kirby (our dog) out, so we were alone. Jenny held Daniel and checked him over so gently and tenderly. I remember our conversation going a little like this:

J: "He has a simian line on his hand."
E: "Does that mean anything?"
(long pause)
J: "Sometimes. He has such interesting eyes."
(I think at this point I started to panic a little inside because I was starting to realize what I thought was an OCD-like obsession had been validated in some way.)
J: "Has the pediatrician been in to look at him?"
E: "Yes."

I don't remember how our conversation went after this, but Daniel's unique features didn't come up again.

And the pediatrician had been to look at Daniel. The night before, the same day Daniel had been born, the pediatrician had been in to see him, and hadn't said that anything was amiss.

Immediately after Jenny left I googled "simian line." And as soon as I read what I read, I think I knew. I knew that something was different about Daniel, and I knew it couldn't be one of the more life threatening options, because he was nursing so well and doing well otherwise.

As soon as Joe got back, I shared the info with him. I knew the pediatrician would be in again soon and I asked Joe to bring Daniel's simian line to the pediatrician's attention. I felt like I had to get in the shower. So I did, and the pediatrician arrived while I was in there. Joe peeked his head in and asked me to get out. The pediatrician wanted to talk to us.

When I was getting dressed, I thought to myself,

"I will always remember what I was wearing when they told me my son has Down syndrome."

It was a blue nightgown. And that is exactly what happened.

I could tell you a lot about what happened next.

I could tell you in detail how we cried, and how my husband said so many absolutely wonderful things about our son that for the first time in my life I knew what it was like to be so proud of my husband that I thought I might die on the spot for love of him.

I could talk about telling my mom and stepdad that night about the pediatrician's diagnosis, how hard it was to say the words "Down syndrome" for the first time out loud, and how the first words out of my mouth afterward were, "I am so afraid that people won't see how special he is!" And how they lovingly reassured me.

I could tell you about the woman who walked into my stepdad's office the very next day with her husband, wanting to work on financial planning issues concerning her son with Down syndrome.

I could write about the first time I took Daniel to Mass, noticing the responsorial Psalm was Psalm 139, and feeling a rush of love from God, feeling like He was holding us in the palm of His hand.

I could talk about a million coincidences, "signs" from God, chance meetings, kind strangers, poems and songs out of the blue. I could tell you about the kindness of the pediatrician in the hospital. I could tell you how not ONE single person who loves us ever said the words "I'm sorry."

I could talk about how I've never felt closer to God in my life than I have since Daniel was born.

But I'm not going to elaborate about any of those things. Some of those things would make wonderful stories, but the story of Daniel having Down syndrome isn't really my story to tell.

It is his. And so far I am feeling so privileged to be a part of Daniel's story.

"For everything created by God is good, and nothing is to be rejected when received with thanksgiving."
1 Timothy 4:4


  1. That was so heartfelt and beautifully written. You are a wonderful mother and Daniel is such a precious baby, it's like you two are a perfect team.

    I am honored to get to know you and your family and see Daniel grow up surrounded by love.

    1. Thank you Lisa. I admire you so much as a doula and woman and I am excited to get to know you better as well. <3