The Birth of My Daughter With Down Syndrome: A Dad's Perspective

Christopher kissing Catherine as
Noah looks on

 I have not written on this blog for almost two years now. I was so caught up in the busyness of life.

But I want to write about the birth of my beautiful daughter Catherine Marie.

I can't describe waves and waves of feelings and worries I had when I found out she needed to be tested for Trisomy 21, commonly known at Down Syndrome.

Catherine is so beautiful.

 Catherine was born on a Saturday morning. She was 6 lbs, 8 oz. She was only 18.5 inches long. She is a wee little thing.


She was not eating from mom, nor a bottle and had to go into the NICU (neonatal intensive care). I was so afraid about her condition and that we could lose her. The nurse assured me she had seen MANY Downs babies before and that she was sure Catherine had it. I hoped it wasn't true. Catherine was released from the NICU before even the next day came up. We came home the next day. But we had to wait for the news. Waiting was difficult. It was a time of worry.

She is almost smiling here.

 I wondered and wondered looking for those common features that come with Down Syndrome. I couldn't tell by the palms of her hands. I wasn't sure about her feet. The only thing I noticed really was her almond-shaped eyes. But when her eyes were closed all the time, it was pretty hard to tell. I just prayed. People from church prayed for Catherine as well.

On the Thursday evening after we came home our pediatrician called us. I put on the speaker phone so that Elisabeth and I could both talk to her. The result? The doctor told us in a stoic voice. Catherine tested positive for Trisomy 21. Her words that followed were exactly this: "I'll give you a moment to let that sink in." But the reality of this possibility was starting to sink in all week as we waited for these results. I remember my training from seminary and reading a little book called Good Grief about the stages of grief. The initial stage is denial. But I think I had been going through that all week telling myself that "I don't see it in her" when in reality I really did see it, at least in her eyes.

She looks like my boys in so many ways. She has the same round head, the same nose and the same lips I think. There is a family resemblance. But her eyes were different.

Christopher in his lack of understanding cares little for these differences. He just loves her. Oh, yes, he was whiny at first a little. But when I asked him if he thought his sister was pretty, in his own limited way, he simply said "yeah."

I asked him if he loved me. He shook his head "no" and laughed in my face. I asked him if he loved his mother. The same response; a "no" shake and a smirk. "Do you love your bubba?" (Noah). Again with a "No."

But when I asked him if he loved his sister he enthusiastically and with a heart full of love said "YEAH!"

What can I say? He has no prejudice. He only has love. She is his little sister. She is not a child with a handicap to him.

She is my daughter. Though she has a handicap, and I must help her get all the help that she needs, she is just my little angel. I desired a daughter, and God graciously gave me a daughter. He blessed me with her in spite of the extra chromosome attached to pair 21. She is my daughter. I fell in love with her early on...but I think in my grief, Christopher beat me to it!

Christopher opened his heart to her immediately because he wasn't worried about her health or her handicap. He has handicaps too. He is not like other kids. He doesn't have full speech development at the age of six.  But he is still a better man than me!

Just look at him kiss her gently in the photo at the top. He was fully devoted to her from the start. I was trying to guard my heart in the case I would lose her. In spite of this, I could not defeat her charms with a hard heart. Every time I held her in my arms or fed her a bottle I knew she was mine and I was hers. Every time I see her picture or hold her I ask myself how this little girl with a serious "syndrome" can be so beautiful.

I've worked through a lot of this new reality in our lives already a little over a month into it. It was hard. Praying and self examination is hard work. I spent many nights in anxiety with earphones plugged into my iPhone listening to D.A. Carson sermons listening to the WORD OF GOD to give me hope, at least a minimal understanding of God's purposes in our troubles and sorrows (though I don't have all the answers), and to just be distracted really from my own disorganized thoughts. What better way than to organize my thoughts by listening to the Bible preached in an intelligent organized way? I've come to these conclusions.

I still believe that GOD IS GOOD. I still believe that GOD IS SOVEREIGN. And I believe more than ever that things like this happen to teach us to let go of this life when the time comes, and look forward to the future life in heaven.

I have more to write later as I learn to love my family in this new reality. I have to embrace change because it is certain in my life. I believe Catherine's life has value. She is not a tragedy. She is a blessing. And she has succeeded in charming me. She has softened my heart. And she is teaching me deeper of what it means to love. Christopher is teaching me too. Noah is somewhat of an observer. But he will come along. He loves her too. I know it. He wants to kiss her too. Who wouldn't?

Greg