Other Voices: A father’s journey to acceptance

From Jim Schmitz:

The last day of Christmas Break and I fell right to sleep. I slept enveloped by what most consider the American Dream: an amazing wife, a handsome 3 ½ year- old son named Grayson, a beautiful 6 month-old daughter named Riley, a job I loved, and a really big TV.

Everything was great, until 2 ½ hours later.

My wife, Kathy, wakes me up.

“Something is wrong with Riley.”

Our experience with Trisomy-18 was unique. We didn’t know for 6 months that anything was “wrong” with our daughter. Right after she was born, she simply could not eat. Riley was quickly moved to NICU and there I stayed with her. I aided the nurses with placing a feeding tube into my tiny princess and slowly pushed through her first nourishment. Her hand never left mine. After 40+ hours without sleep or food, the nurses kicked me out and ordered me to sleep. I ate half a turkey sandwich, took a 3-hour nap and then I was back with Riley.

Riley left NICU with a tank of oxygen and the ability to slowly drink from a bottle. The doctors determined that her trouble eating was…“just one of those things.” At the hospital we had declined genetic testing. Kathy and I thought our baby girl had been poked and prodded with enough needles. Declining that testing was a decision I’m not sure we regret.

During her six-month well appointment when we had to answer “no” to the doctor’s questions about Riley’s progress, it was decided that her rough start was delaying progress. We were instructed to keep an eye on her.

I wasn’t worried. Riley would be fine. Kathy, however, hit the internet.

“Something is wrong with Riley.”

We sent her blood for genetic testing the next day. We had 6 weeks of uncertainty, dread, and tears to wait through. The call finally came: Trisomy-18.

The uncertainty, dread, and tears continued.

Now it was our turn to make calls: Grammy, Grampy, uncles, aunts, and cousins.

“Something is wrong with Riley.”

Each phone call forced me to relive my new reality. Each call brought a new layer of loneliness. I was on a new path. My friends and family all had perfect lives and perfect kids. They had lives relatively free of the stress and isolation that I now consider normal. They offered help and support, but this reality was mine alone. As a dad, I was a failure. It was my job to keep her safe, and I couldn’t do it. As cliché and stereotypical as it sounds, dads define themselves by their ability to protect their children. My daughter had this genetic condition that would shape her life and I could do nothing about it. I was, by all reasonable measures, a failure.

Yes, I realize the problem with that logic. We had done nothing wrong. A 1 in 3,000 chance. Dumb luck. I kept replaying that scene from Good Will Hunting between Matt Damon and Robin Williams:

“It’s not your fault.” “I know.” “It’s not your fault.” “I know.”

That feeling of failure has never gone away. What has ameliorated that feeling, however, is Riley herself. Holding, loving, and playing with her changed things. As I began to follow other people’s journeys online, I was haunted by phrases such as “30 minutes we had together” or “we had the greatest three days with our daughter.” I began to realize that I was one of the lucky ones. My internet friends had minutes. I had months…and soon, years.

I had time.

We had a wonderful staff of medical professionals to help us along the way. They never treated Riley as anything less than royalty. No talk of T-18 being “incompatible with life.” They wanted the best for her and ordered a battery of tests to gather data. Each test for Riley was gut-wrenching for me. With each test, I lost hair and gained weight. But with each one, a new feeling began to take hold: hope.

Her heart, brain, liver, and assorted innards checked out relatively healthy. One kidney had an extra chamber, but no one seemed overly concerned. Each bit of good news reassured me. Riley soon started therapy. Physical, occupational, and speech therapists all became part of our routine. Riley took metaphorical (and soon literal!) steps forward. She began to develop a personality all her own.

She has the greatest smile imaginable and a laugh that can melt the most cynical of hearts. She inherited her determination from her mom and worked her tail off through all her therapies. She learned to crawl. She learned to stand with assistance. She took her walker all around. She waves to friendly faces. She loves books. She has a brother who doubles as her best friend. Grayson and Riley became a tag-team. Inseparable. 3 ½ years later, we are still waiting for their first disagreement. Never have two people gotten along so well.

“Daddy.”

“What did she say?”

“Daddy.”

She knows who I am and can say it! I try to act nonchalant, but whenever Riley says “Daddy” I turn into goo.

Her vocabulary expanded: Mommy, Bubba (brother), hi, and my other favorite, buh-bye.

Then came the day Riley said the word that lit up the world.

“Baby girl…what’s your name?”

“RILEY! RILEY!”

She knows who she is! She knows her family! Amazing.

Here was a girl that no one knew what she would be able to do or what her life was going to be like. She continues to exceed all reasonable expectations.

Every day is an opportunity. Every day anything can happen. Every day is a gift.

One day, I will have to face the reality of her condition, and I too will have to look back fondly on the time when we were all together. One day I will have to. Thankfully, not today.

“Something is wrong with Riley.”

No. There isn’t.

She is my daughter. My Tiny Dancer.

And I am her father.

We appreciate Jim for sharing his story to help ease the transition for other fathers on this journey. Do you have a story, an opinion, a cause, or an event you want to share? Let us know by emailing us a submission at t18info@trisomy18.org or send us a link to your blog.