Life With My 'Down's Kid'

06/23/2015 04:57 pm ET | Updated Jun 23, 2016

I went to a new doctor. I've been throwing up a lot, so we're trying to get to the bottom of it. I had a recent ER visit over it, so I was referred to a GI Specialist. I had never met this doctor before and the referring physician had seen me once for 10 minutes. They gave me a print out of my labs to bring with me. He had no other background information on me. There were no forms to fill out with my medical history or what medications I'm on -- just privacy practices and billing to sign.

I brought my youngest daughter, Carly, into the office with me. He walked in and feigned a smile, commented on her "down's eyes" and then he just stared. I said, "Yes, she has Down syndrome."

"How is she doing?"

"Great! She had an open heart surgery at four months over at CHOC and she's been phenomenal since."

"What was wrong with her heart?

"A large VSD, two small ASD's and a mildly hypoplastic aortic arch."

"Swiss cheese! That's common in Down's kids." It's like nails on a chalkboard hearing her referred to as a "Down's kid." She's a child with Down syndrome, and her name is Carly.

"Yep, I think it's around 50 percent of children with Down syndrome have a heart defect of some kind." I over emphasized the words in hopes they'd sink in.

"Is she your only?"

"No, I have four other children."

"So what's going on?"

"I've been throwing up several times every morning for months. I went in the ER because there was blood."

"Have you considered stress contributing?"

"Of course, I'm sure it does but I throw up every morning before I even start my day. I really think there's something more to it. I'm not having a panic attack and then throwing up. It hits before I'm even fully conscious."

"Do you feel nauseated before?"

"No..." And before I even had a chance to explain the stabbing pain and where it hurt, he cut me off.

"Sounds to me like it's psychosomatic. Don't feel bad about it. You have a down's kid. Anyone would be depressed and anxious. Life is hard, it's not what you expected or hoped. No one could handle what you have to deal with and not be depressed. I'd be depressed in your situation. We'll do tests, rule out some things -- but I think it's pretty obvious why this is happening and it's not gastrointestinal."

That was it. My entire medical history, the cancer that runs in my family, none of it mattered. I had a child with Down syndrome, so obviously that's where the problem lies.

Could you imagine if he said that to any other mother about the way their child was born? "It's just your child's gender making you depressed! I'd be depressed if I had a daughter too instead of my perfect son!"

I wish I could tell you that I put him in his place. That I stood up for my daughter and told him that she wasn't a burden. That while I didn't plan on having a child with Down syndrome, I had never NOT planned on having a child with Down syndrome either. I was just grateful to be a parent. The only thing I envisioned in parenthood was love -- and my daughter is nothing but. She's my heart. I broke down crying, to which I'm sure he took as a sign of being right. I took the order for the upper endoscopy and left.

I cried out of frustration. I cried out of not being heard. I cried for my daughter's future, and the cruel reminder that there are those that see her as less than. When we got home, I held Carly to my chest and rocked. I felt her now strong little heart beat and she gave me some giant grins as the rest of the world melted away. She's what saves me.


She's almost a year old. Her 11 months have taught me more about life, about family, about love, about what's truly important. It's not cliche. She's made me grateful for all of the things I used to take for granted. She's been through more in her short little life, than I have been through in my entire adult life. She's tough as nails but she greets every single morning with the biggest smile. She's calming. She's my strength.

The hardest thing about having a child with Down syndrome isn't the child and it isn't the Down syndrome -- it's public perception. It's a lack of funding, resources and research. It's having to fight just to get your child an education and therapies. It's battling ignorance, and it's a full-time job.