The Beauty of the Unknown :: My Journey as a Special Needs Mom

The Beauty of the Unknown :: My Journey as a Special Needs Mom

Four and a half years ago, my journey as a special-needs mom began.

On September 9, 2021, after four days in the hospital because of preeclampsia, doctors performed an emergency C-section. I was 34 weeks pregnant, and my blood pressure wasn’t able to be controlled by medication.

I remember a fierce cry heard from a room away and my mom saying, “He’s got a head full of blond hair!” They told me before we entered the operating room that they’d take him to the Neonatal ICU out of an abundance of caution. I was prepared for that.

I wasn’t prepared for the announcement that came from the NICU doctor while I was in recovery.

“We believe your son may have Trisomy 21, or Down syndrome.”

I can’t remember if the lights were on or off or who, besides my husband and the NICU doctor, was in the room. Had my mom left? Was my husband standing or seated?

No. They didn’t mention anything during my prenatal ultrasounds. I chose not to do any genetic testing because these types of things don’t happen to people like me. It happens to stoic women who are strong enough to handle this, not someone as discombobulated as me.

I fell apart, fumbling to call my mom and sister and tearfully explaining what I’d learned. If my husband was as panicked as I was, he didn’t show it. He kept reminding me that we were okay. Our new son, Cade, was okay.

It would be hours before I was able to see my son. I was moved to a different room, and my husband went to the NICU. I stared at the ceiling and cried. My thoughts raced on a loop, fearing the unknown.

Then the pain of the C-section set in. While my mind tormented me, a stabbing pain overtook my lower stomach. It was a deep, unrelenting ache that I needed to stop so I could get out of the hospital bed and sit in a wheelchair.

It’s strange — the things you accomplish when it’s something you really want. I managed to get to the NICU, eager to set my eyes on the little boy who’d been kicking me for the past 34 weeks. The trek was long and painful, but when I laid eyes on him, I was in love. I’m not sure what I expected to see. I have experience with the Down syndrome community, but nothing this intimate.

I didn’t see the classic physical traits. Only a four-pound baby who made my heart triple in size.

The thing about receiving that sort of diagnosis, though, is that the emotions don’t just go away. You grieve the child you thought you were going to have. Waves of denial, sadness, anger, depression, and bargaining sneak in out of nowhere.

On the second night in the hospital, while my husband slept, I pulled up my phone and sent a Facebook message to my third-grade teacher. I knew she had a grandson with Down syndrome, and I needed to know what my future looked like.

It was the best thing I could’ve done.

The next morning, she sent the most beautiful message, which loosened the vise around my head. I then spoke to her daughter, who loosened it even more.

We were then put into contact with a group called DSAG, or the Down Syndrome Awareness Group. The founders spoke at length to my husband and brought us a gift card to our favorite, C.C.’s Coffee. The most beautiful part of it all was the words of encouragement from dads and moms who were where we were.

For the first three months of Cade’s life, he lived in the NICU. We went home the day before Thanksgiving. Cade was on oxygen and had a G-tube in place.

I was out of maternity leave. It was hard. But that smile when I woke him up every morning made me forget how hard it was.

He graduated from oxygen and the G-tube within two months. His occupational, physical, and speech therapists became our family. We built a normal that suited our family.

Cade is the baby of four. He introduced us to colors I didn’t know existed. There’s green and blue, but also turquoise. He’s a cool breeze on a warm summer day.

He’s a magnet in every situation. It’s impossible to see him without smiling.

Every year, we celebrate with his friends at the annual Buddy Walk in downtown Baton Rouge.

I write all of this to showcase a reality that isn’t presented when a Down syndrome diagnosis is given. It’s normal to become emotional and be fearful of not knowing what life will look like.

Don’t let that fear stop you from the beauty that is an extra-chromie homie.