Category Archives: Prenatal Diagnosis

The last time I said it…

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As a parent of a child who has Down syndrome, there’s one word that makes my stomach churn every time I hear it, the R-word.

I admit, as a teenager and young adult, I used the word more times than I can count. I used to be so far from “politically correct” with a lot of my language before I became a parent. You never knew what the heck was going to come out of my mouth. Looking back, it was pathetic. But that was then and this is now, and I can’t dwell on my own past actions, but hopefully I can help to change someone’s future actions.

Come on people, words can hurt. They can really hurt, even if you don’t mean them in the context you say them. It doesn’t matter if it’s the r-word, n-word, making fun of someone who is gay, Jewish, Christian, anything hate related. It all plain old hurts to someone at some point!

I’ll never forget the last time I said the r-word. I was pregnant with Joey and we had recently gotten my prenatal diagnosis. I was laying in bed watching TV one evening. I can’t remember exactly what I was watching but I remember laughing out loud to myself and saying, “That’s so ret@rded!”

As soon as the word came out of my mouth, I realized what I had said and tears filled my eyes. I could feel Joey fluttering around in my stomach as I wiped away the tears then started rubbing my stomach. I vowed right then and there to NEVER use the r-word again. And 11 years later, I still haven’t used that word and never will again.

I’ve called people out on using the word before in front of me. Most used the excuse, “I didn’t mean it that way.” I know they didn’t but then how DID they mean it?
I don’t call people out as much as I used to. Instead, I take a deep breath and I pray for that person. I pray that they open their eyes and see how beautiful Joey and others like him are and they don’t deserve to be associated with language like that.

John 13:35-35

“A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.”

But as for ignorant people who use the r-word on a daily basis along with other hateful words, I just pray for them and pray that someday they will change. Heck, if I can change, ANYONE can.

I know that years ago, it was acceptable for people to use the r-word when referring to individuals with Down syndrome, and Autism. But times have changed, and as a parent of such an extraordinary child, I must advocate for him in every single way possible.

There is only one r-word that should be used towards individuals with any intellectual or developmental disability and that word is RESPECT!

“He’s Perfect”

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March 14, 2006

A little follow up after my post that was featured on Her View From Home….

I often think back on my prenatal diagnosis with Joey and remember the pain and the emotions I felt at first knowing that my baby was going to have Down syndrome. Anger, confusion, denial, and sadness just to name a few. Eventually those feelings started to turned into anticipation, nervousness, and joy.

After all, what’s an extra chromosome? He was still going to be our baby and no one else’s. He was something my husband and I created together through our love for each other and God. And that was something that no one could take away from us.

Unfortunately I still had some of the previous emotions lingering I had felt early on once we received Joey’s prenatal diagnosis. I remember those last couple weeks before he was born. Like every typical mother, I was wondering what my baby was going to look like. Was he going to look more like me or his father? Or was he not going to look like either of us and just look like a baby with Down syndrome? I was honestly terrified of the looks I imagined in my mind that people were going to give us having a “not normal” baby.

I remember being one of those people who would stare at people with special needs. Not necessarily in a mean way or to be rude, but more out of curiosity. Occasionally thinking, “I don’t know what I would do if that was my child.” Never did I imagine that my thoughts would someday become a reality.

I also remember praying to God that I just wanted Joey to be healthy. No other complications besides him having Down syndrome. That’s what I prayed for…

Between 40-60% of individuals with Down syndrome have congenital heart defects. We had found out during my pregnancy through a fetal echocardiogram his heart was perfect. There were no defects visible through ultrasound. There are other health complications sometimes associated with Down syndrome parents have to worry about: thyroid problems, childhood Leukemia, low muscle tone, swallowing difficulties, sleep apnea & other ear, nose and throat problems, gastrointestinal issues that could be detected after he was born.

The day Joey was born, I sat in my hospital bed, holding him, studying his face, trying to decide who he looked more like, me or my husband. I remember looking at every inch of him, falling in love instantly. His little nose, teeny tiny fingers and toes, everything. He was so beautiful!

Thankfully after being checked out by his pediatrician, all appeared to be good with Joey. No major health complications! All those previous negative emotions flew out the window. My mother in law said it best when she came into meet her first grandchild later that day in two simple words: “He’s perfect!”

Psalm 139:13-14

For you created my inmost being; you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Hew View From Home

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Today’s a big day! Today is the first time ever being featured on a different blog besides my own. Many of my family and friends remember my past days blogging on my original Raising Joey blog and the following I had back then.

I wanted to write a new version of my pregnancy story with Joey to share with new readers and decided it was important to have it shared with as many people as possible. You never know if someday, someone who reads my story who is in the same prenatal shoes as I was, my story may help to save that pregnancy and that beautiful baby’s life.

Last week, I had looked at several different popular, larger mom blog websites and chose Her View From Home to share my story with first. And wouldn’t you know, after I submitted my story, less than 24 hours later, I received an email back from their editor wanting to use my story! And today it was published and I couldn’t be more proud! I just hope I can write more for the lovely ladies at HVFH sometime soon, the more awareness we raise for Down syndrome and other developmental and intellectual disabilities, the better!

Our Journey With Down Syndrome: We Would Never End This Pregnancy