Down Syndrome

I Was Getting A Broken Baby

/ Jordyn Redwood / Leave a comment

I’ve got genetically superior genes. I’m a winner with winner’s blood. Learning you’re going to have a child with Down Syndrome is like experiencing a death. That’s what I felt like. Like I was getting a broken baby.”

I work with a lot of special needs kids as a pediatric ER nurse. About three years into my nursing career (after working three years in adult ICU/ER) I started working in a pediatric ICU. Back then, I wasn’t as adept at working with kids as I am now and in my early PICU days I remember times when I would just stand in the middle of the unit and wonder what I was going to do about all these crying kids.

At shift change, we would ask all the parents to leave. It was an open unit so it was hard to protect patient privacy. Some of these aspects are highlighted in my most recent medical thriller, Peril. During one such time, we had a young girl whose leg was in traction and she began to fall apart when her parents left. Now– this was before I was a mother so cut me some slack but I stood there and thought, “What am I supposed to do for her?” when, within a few moments, a more seasoned nurse came and sat by her bed and stroked her hair to calm her down.

Oh, well, I can do that, too!

Not long after this, I was caring for a Down Syndrome child who needed heart surgery. It is not unusual for a Down Syndrome child to have heart defects. Sadly, this child’s veins were not the greatest and it was always a challenge to get blood and IVs in place. As a fellow nurse and I tried multiple times to get an IV in this todder– all he would do was say “I love you.” over and over, put his arms around my neck and snuggle his face against my cheek while all I was doing was causing him pain.

And I still cry thinking about that moment.

There is something about caring for special needs kids/adults that is challenging but truly brings out the best in most people– this deep seated sacrificial love. I believe all life has value and maybe special needs kids are more about teaching us about ourselves than about anything else.

The above quote comes from this piece about an athlete/father, Tom Rinaldi, and the emotional turmoil he went through when he learned he and his wife were having a child with Down Syndrome. It’s about 15 minutes but I hope you’ll take the time to watch.

It’s why I believe in the value of every life. Without this daughter, I think this man’s life would not nearly have been as rich as it is now. What do you think?

https://youtube.googleapis.com/v/Q4foXehDmWs&source=uds

In My Arms: A Tale of Special Need

/ Jordyn Redwood / Leave a comment

I’m pleased to host friend and author Gillian Marchenko as she guest posts to give a brief glimpse of taking care of her special needs daughter.

Many of you know that I’m a pediatric ER nurse and I come into contact with special needs kids and their families often. What you don’t know his how tough as nails and compassionate these caregivers are. Truly, some of the most special people on earth. Today, Gillian blogs about something so simple– holding her daughter in her arms.

Gillian, I am honored to have you here. Welcome.


“Mom!” Polly yells out in her sleep. Her body thrashes to and fro on our queen sized bed. Her legs kick the covers off. Sweat glistens her forehead.
 

The house is quiet. My husband and two older girls went out for the night. My youngest has been asleep for an hour in her room. I bedded Polly in next to me, thinking that my husband would move her when he got home, and that her slight of breath, up and down, methodical, musical, may inspire me as I grab a few last minutes in the day to write with our fuzzy white dog at my feet.
“Honey, what’s wrong. Tell Mama what’s wrong.”
She doesn’t respond but continues to fuss and squirm.
“Shh, there, there,” I attempt to settle her back into her dream cycle. This part isn’t new to me, a seasoned mother of four. There have been countless nights in the last twelve years where I’ve brushed wet hair off a forehead, hummed a melody, and lulled a child back to sleep.
But my coaxing doesn’t work.
“What’s wrong, Polly? Does something hurt?”
My daughter nods, and a shot of electricity zaps my extremities.

When Polly was born at 37 weeks, she wasn’t breathing. The doctors resuscitated her, and she spent the first three weeks of her life in an incubator fighting for her life.

By the time I felt the weight of her tiny, five-pound body in my arms, I had already been informed of her diagnosis of Down syndrome.
I wrote about that time in my recently published memoir Sun Shine Down. Polly too weak to leave her plastic dome and me, too weak to fathom the curve ball of Down syndrome. 
Sometimes my arms ache to hold Polly the baby. What I wouldn’t give to scoop her up, to hell with my fear of the unknown, to hell with sickness, and to hell with stigmas hidden within, stigmas I didn’t know existed in me until I heard the words Down syndrome. 
“Show me where it hurts.”
Polly gestures towards her head.
“Your head hurts?”
She nods yes again. I pull her up onto my chest. It is not an easy task because she is now seven years old. 
But we don’t screw around with headaches in this family.
Three years ago, Polly had a catastrophic stroke which resulted in the diagnosis of Moyamoya, a disease that thins the arteries in the brain to the point of strokes and seizures. Unbeknownst to us, this disastrous disease had been causing mild strokes in her body throughout her short little life.

Polly underwent two brain surgeries that diminished the chances of recurrent strokes and seizures from 67% to 7%. She rocked the surgeries, actually running circles around me after the second one, just days after her neurosurgeon cut through skin, skull, and brain to create new blood flow for our girl.
“Here, honey, let me see.” I force Polly’s face towards mine and examine her for signs of stroke. No twitching, no loss of motor control. The fearful moment releases into the air around us. I hold her to my heart like I longed to do after her birth. She settles, and sinks into me. My body is quicksand. I engulf her.
We’ve danced around death too often.
Polly is here tonight, in my arms. I don’t take it for granted.  
She’s here. I feel her weight. She is happy. She loves her life. Her life overflows with joy, so much so that she splashes her joy on those around her, and continually plugs up my heart, so that I can be filled too.
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Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. Her book, Sun Shine Down, a memoir, published with T. S. Poetry Press in the fall of 2013. She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record. Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us. You can connect with Gillian on her website, on Facebook and Twitter.

Matt Patterson: Writing Personal Heartbreak 1/2

/ Jordyn Redwood / Leave a comment
Trying to capture the emotional heartbreak of a diagnosis and simultaneously making sure specific medical information is correct was a big hurdle for me while writing My Emily.
I wanted this book to be a quick read, but one that could leave a lasting message or lesson. Someone could sit down for an hour – give or take a few minutes – and perhaps walk away being touched in some small way.  My intention was to have the reader feel I was sitting right across from them telling our story.
It was my hope when I started writing this book that I could share the feelings and heartache one experiences when hearing that your little one is born with Down syndrome or later diagnosed with leukemia.  I wanted to put readers in the hospital room with us – to wonder what my emotions and thoughts were when hearing this gut-wrenching news.
Although there are some intense moments in My Emily, I also did my best to infuse humor. I’m told I can be quite humorous and I tried my best communicating this sense of humor, whether it was in particular moments or just how I talk. Again, I wrote this book with the premise of me and the reader sitting down at a coffee shop and talking. I wanted readers to have a hunch as to who Matt Patterson is as a husband, father and regular guy.
In addition, I wanted to make sure my medical information was correct, but simple. When one begins to use words like chromosomes and genetics, I didn’t want to lose readers. I didn’t want them to have to read paragraphs three or four times to understand what I was trying to say.
In the following excerpts from My Emily, I share the moment where we learn our daughter may have Down syndrome …
He walked into the room and closed the door. As he set down his clipboard, he also pulled the ceiling curtain around the bed – even though we were the only ones in the room.
I began to think, This can’t be good.
I panicked.
My mind raced.
After taking a very deep breath, our physician told us that Emily was born with Down syndrome – a genetic, chromosomal disorder. To be honest, I didn’t even know what Down syndrome was.
We were numb.
I couldn’t breathe. I truly couldn’t breathe.
“An extra chromosome,” the doctor said with a deep sigh. “At conception, an individual inherits 23 chromosomes from the mother and 23 from the father. However, sometimes a person receives an extra chromosome from one of the parents. In Down syndrome, an infant most often inherits two copies of chromosome 21 from the mother and one chromosome 21 from the father for a total of three chromosomes 21.”
It was as if the world went quiet. I heard nothing.
We did everything right, I said to myself. This just doesn’t happen – not to us, anyway. It’s not real. It’s a dream – a really bad dream – right?
Not so.
“It’s nothing you did or didn’t do,” he said. “This could happen based on your genetic history or by just pure chance.”
I was of the opinion that this was just a horrible mistake. Chromosome 21? I asked myself. Chromosomes are numbered? Copies of a chromosome? Pure chance?

Return for Part II on Wednesday.

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Matt Patterson is the author of My Emily and an award-winning writer, editor and communications professional. His two-plus decades of experience include public and media relations, as well as print and broadcast journalism. He volunteers his time to helping organizations and charities dedicated to assisting families with children who have special needs or those battling pediatric cancers. He resides in Arizona with his wife and two daughters.You can learn more about Matt at http://mattpatterson.me/ and  http://www.my-emily.org/.