Between Me and God

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A few weeks ago, I was at a retreat. At some point, the group began talking about disability and the words we use to describe it. We talked about how language has changed over the years and how the way we speak about disability matters. 

Somewhere in the conversation, I brought up something I'd believed for years and often told people. I always believed God gave me Lily's soul, but couldn't believe He gave her Down syndrome, autism, the heart defect and everything that has caused her suffering. 

One of the ladies gently came back with "That's between you and God."

Those five words stayed with me. 

That same retreat, we reflected on Jeremiah 1:5: "Before I formed you in the womb I knew you."

I immediately thought of Lily.

For years, I'd believed I had an answer. Now, I wasn't so sure anymore. 

As I kept praying through it, another Scripture came to mind. John 9:1-3 tells of a man born blind, and the disciples want an explanation for why he was born that way—who had sinned? Jesus rejects their reasoning and points instead toward the works of God being made visible through the blind man's life. 

The following Sunday, while praying with the Hallow app, I listened to Fr. Mike Schmitz's homily on the Gospel reading from Matthew 15:21-28. Fr. Mike reflected on the Canaanite woman and what we do when God's answer is no. Jesus tells her no. And she stays.

Fr. Mike asked, "Can God tell me no and I won't go anywhere?"

My mind went straight back to 23 years ago, right after my 20-week ultrasound, hearing my OB tell us that our baby had two soft markers of Down syndrome. They offered amniocentesis for confirmation. We declined because of the risks and knew no matter what, we'd still have her. 

The rest of the pregnancy we desperately prayed and prayed and prayed:

Please, God, don't let our baby have Down syndrome. 

And then Lily was born.

She did.

The answer was no. 

I was devastated.

I was angry with God.

I was disappointed in Him.

As I listened to Fr. Mike's homily about hearing God's no and still staying, I realized something.

I think I did leave for a little while.

But somehow...I came back.

Honestly, I felt like I had to forgive God for saying no.

Clearly, I know God didn’t commit some wrong requiring my forgiveness. But emotionally, that’s what healing felt like.

Lily needed me.

She needed prayers.

Lots of them.

And every day…

I loved her more.

And somewhere along the way, Down syndrome stopped being the terrible thing I had prayed against and became simply part of the daughter I adored.

I didn't stop wishing I could spare her suffering.

I just stopped wishing she were someone else.

Then there are the ripples of Lily's life.

Lily soothed fears I once thought would consume me.

She changed my dad's understanding of people with Down syndrome.

She has a delightfully quirky sense of humor that has filled our family—not just our home—with laughter.

She taught me courage I didn't know I possessed.

She taught me to slow down enough to celebrate little victories that most people never notice.

She helped me discover that grief and joy can live side by side.

Her life led us to adoption—and eventually to Dasha.

My parents established a special-needs trust that will one day help others beyond Lily.

Her cousins are growing up learning compassion because they know and love her.

There are countless strangers whose lives she has quietly touched.

And I know there are ripples I'll never see.

Did God will that Lily have Down syndrome? 

Or did He allow it, knowing from before she was conceived exactly who she would be and everything her life would bring?

Maybe God willed that Lily have Down syndrome.

Maybe He permitted it within a world where suffering exists.

I don't know.

After weeks of praying, reading Scripture, and listening to wise priests, I've realized I may never fully know this side of heaven.

But I know something today that I couldn't have known when I was 20 weeks pregnant and begging God to give me a different answer.

Before I knew Lily...God did.

And almost twenty-three years later, when I look at everything that has rippled outward from this one little life, I still don't know why.

But I know He has never wasted a bit of it.

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