When my daughter was born with Down syndrome, our friends came to visit us at the hospital. Our oldest daughter was staying with them and they had brought Ellie to meet her baby sister. Our friends brought their daughter along too, she was the same age as our oldest, and like our youngest, she has Down syndrome.
While we visited in the hospital room, we talked about how God had orchestrated things. They were some of our closest friends and I had watched their daughter for a year while her mom worked a part time job. And because they had walked this road before us, they knew we probably had many mixed feelings about the diagnosis.
“How are you guys feeling?” Bill said.
For myself, I was experiencing so many different emotions I felt like I was stuck in a tornado and couldn’t get out. It was hard to explain what I was feeling because there was so much happening in my heart I could not make sense of it.
But there was one thing I could explain.
“My favorite Bible passage has always been Psalm 139.” I said, “I keep thinking about it. One thing I know for sure is that God does not make mistakes, and He made Nichole fearfully and wonderfully. There is a plan and purpose for her. For her life.”
We were discharged four days after Nichole was born. We knew she had Down syndrome but they said they had to run some blood to have a definite diagnosis. Three days later, the doctor called, “I just wanted to let you know her blood work came back positive for Trisomy 21. She has Down syndrome.”
I called my husband at work and he came home. It wasn’t big news, we knew it, we could see it, we’d known since I was pregnant that most likely she did have Down syndrome based on several markers. But somehow it felt like we had received the diagnosis for the first time, perhaps because it was the official confirmation of her diagnosis.
A few hours later, Bill stopped by the house to drop of some balloons to celebrate the new baby. He also brought a gift for me. I opened it up. A picture frame with Psalm 139.
I know the world does not understand disability. And while I’ve learned much in the last eight years now that I parent two kids with disabilities, I also know that there is so much more I have to learn. But through all of this learning, the words of Psalm 139 are true. A constant reminder that all life is beautiful, all life has a purpose.
And while I have memorized Psalm 139:13-16 in the New International Version (same as the frame I have in my home), I love how relevant the language of The Message is:
Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
Psalm 139:13-16 The Message
My daughter’s disability did not surprise God. It surprised me, but now that she is eight years old I can tell you the surprise has been in how rich and full our life has been. Down syndrome is a part of my daughter that I have come to cherish. She is perfect the way she is. I wouldn’t trade her for the world, every part of her, every intricate part, every single chromosome: precious.
The tornado of emotions has subsided, I now know how I feel. I feel joy, pride, and a fierce fierce love for her. I feel like the luckiest mom to call her my own.
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