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When I Held My Baby With Down Syndrome for the First Time

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Early in 2012, my wife and I decided it was time to work on baby number two, and then we were pregnant (sorry I know some hate using the “we” term with pregnancy). At 20 weeks we had our standard ultrasound appointment. We found out we were having another girl, and I was overjoyed. As the doctor was finishing up, he told us to collect our things and come on back to his office, which I found a little odd having been through many ultrasounds before. It was there in this small, warm corner office that he told us the sonogram revealed what were considered typical markers for Down syndrome. My eyes lost focus, and that statement just echoed in my head, but I did my best to listen. He mentioned we can have an amniocentesis done to be sure, as sometimes people want to know these things to decide if they want to terminate the pregnancy.

Is that what we should do? Terminate the pregnancy? What kind of life could someone with Down syndrome live? I started losing myself in all of these questions and emotions. I felt my wife’s hand squeezing mine, as it was reassuring me that we were in this together and things could be OK. Eventually we somehow ended up back home, and we cried.

Then my wife went into research mode. She was online finding out everything she could about the path that lay before us while I allowed sadness, confusion and anxiety take the wheel for me. The next couple of days were a blur. We called and talked to our families and received much support in return. I still had a lot of doubt, and it was mostly in myself. Could I be strong enough and good enough to be the father she needs?

I returned to work the following Monday, and my wife ended up meeting me for lunch. We were both anticipating what the results would be. As far as we were concerned, there was only one path forward, and we were on it. We would do whatever it takes no matter what the results of the amnio were, but it was still something we felt we had to know now rather than be surprised by on the delivery day.

The following day we got preliminary results back, and we were told what we had already known to be true — that our daughter will be born with Down syndrome. We saw a genetic counselor and learned more about trisomy 21, and what everything means, and what things we may need to be concerned about going forward that can be common in those born with Down syndrome, such as issues with the heart.

I’m not a religious man at all, I wasn’t raised that way and it’s a bit foreign to me, but my wife is. During this time, we went to church a lot, and at home I prayed a lot. At first I prayed for my daughter to not be born with Down syndrome, but over time that message changed. I started praying for her to be born healthy. I started praying that I could be strong enough and be the father I need to be to her and our other daughter, Kara. That we could be a happy family no matter what. My wife continued to research what we needed to be prepared for starting from the moment of her birth, started researching state-run early intervention programs. I spent some time reading other people’s stories (much like the one you are reading right now) and just preparing myself for the man I needed to be.

November came, and late at night on the 8th, my wife went into labor. When all was said and done, she was in labor for right around eight hours and barely had to push at all (in contrast to the lengthy amount of time it took with Kara at around 28 hours). It still took me a while to grasp it. We were here. I saw my newborn daughter for the first time, and the weight was lifted so fast, I literally became dizzy and had to have a seat.

I have read many stories of this experience told from a mother’s perspective, and there’s something I want to make note of before I continue. The entire pregnancy/childbirth experience is different for a man, and while I know that is obvious to most, there’s a key point I am trying to make. As the father, you don’t necessarily feel that connection to that new child in the same way a mother does in that moment. This child was a part of her mother, growing in there, literally connected, and sharing moments with her that I was barely even a passenger for. Sure, I was there for every ultrasound, and that was great, and it was awesome to feel her kick once in a while, but that is the extent of it until she is out here in the world.

It wasn’t until afternoon that I really got to hold my daughter Teresa for the first time and spend some time alone with her as my wife slept and everyone else had left the room. It was there when she was in my arms and I looked down at her that all felt right in the world. This is how she was meant to be. Teresa and my wife fought together for this moment, and the thought of that was just so powerful to me. Then all of the uncertainty and negativity going through my head the last four months due to her diagnosis came back to the surface in an overwhelming wave of guilt, and I just lost it. I cried and told her how much I loved her and I would and will do anything for her. I looked down at her beautiful, peaceful face and knew everything was going to be all right. Sure, there will be challenges along the way, but we will be ready to face them together.

Four years later as I type this, remembering those feelings and thoughts of uncertainty feels so foreign to me. She is such an amazing girl, and I am proud to be her father. I know she is destined for greatness. She helps make every single day that much more beautiful to live, and I can’t imagine being on any other journey in life than this one.

Dad and daughter

A version of this post originally appeared on Medium.

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Originally published: November 16, 2016
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