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A special needs mom’s response to seeing it in writing

August 7, 2013 by Gillian Marchenko

seeing it in writing

A special needs mom’s response to seeing it in writing

Yesterday I took my six-year-old daughter Evangeline to the dentist and came home sad.

It was a new practice, so I had to fill out Evie’s medical history.

The beginning was easy:

Name: Evangeline Marchenko

Doctor’s name, address, and phone number, immunizations up to date, reason for the appointment.

Standard questions. Simple to answer.

But then I got to the actual medical history, you know, the list of all the possible things your child can have,where you are supposed to check yes or no.

And my palms started to sweat.

Has your child had a history of the following (Check ones that apply):

Arthritis No

Bleeding Problems No

Heart Problems Yes

Kidney/Liver Disease No

Developmental Delay Yes (Down syndrome)

Respiratory Problems No

Behavioral/Learning/Communications Problems Yes

Autism Yes (I believe so, but not diagnosed)

After several more groups of yes and no questions the open-ended questions started.

Is there anything else you would like us to be aware of regarding your child?

And before thinking, this is what I wrote:

“Evangeline has a difficult time trusting people because she spent the first two and a half years of her life in a Ukrainian orphanage. She is afraid of doctors, and will lash out, rage, and bite to get away from exams out of fear and frustration. She is non-verbal, and at six years old, functions around twelve to eighteen months. You may need one or two more people to help with the exam.”

My hand shaking, I set down the ball point pen on the chair next to me and scanned what I just wrote while Evangeline laughed at herself in a mirror on the wall in the dentist’s waiting room.

Why was it so hard to see this stuff in writing?

Evangeline has Down syndrome. She is non-verbal. I know she rages when she is afraid.

I guess it upsets me because I get busy with day-to-day life, four kids, work, husband, church, and I forget, at times, that we are a special needs family.

I forget, although I feel it daily in my bones, that special needs are hard for all involved; the child, the parents and siblings.

But Evangeline is my little girl. I love her.

Even when reality stares back at me, scrawled in a messy hand on a flimsy sheet of paper.

I remember something God wrote. Something true for Evangeline, and for me, and for every other person in the world affected by special needs.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

Psalm 139:13-14

We are created and loved by God. He created Evangeline. He created me. He created you, and your child too.

Reality: Evangeline has special needs. Her challenges prove difficult for our family. Some days I will be sad. Some days she will be sad.

But she is joy and light, and God uses her to draw me to himself, and although it says all those things on her medical history, at this moment she is smiling at herself in the mirror with a twinkle in her eye. She is happy. She is loved.

And we are OK.

-Gillian Marchenko

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Gillian Marchenko

Gillian Marchenko is the author of Sun Shine Down, a memoir about her daughter Polly's birth and diagnosis of Down syndrome while the family lived in Ukraine. She writes and speaks about special needs, depression, adoption, and deep belly laughs and lives in Chicago with her husband Sergei and their four daughters. Most Sundays, you’ll find Gillian in the back row of the church Sergei pastors, bouncing a toddler on her knee and giving the older girls the look. The world is full of people who seem to have it all together. Gillian speaks up for the rest of us. Check out her website at www.gillianmarchenko.com.
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Latest posts by Gillian Marchenko (see all)

  • For parents who aren’t ready to celebrate Down syndrome during Down syndrome Awareness Month - October 7, 2015
  • Love pushes us to the front of the crowd, reflecting on a dual diagnosis - April 1, 2015
  • Letting go of self-sabotage on the special needs journey - March 4, 2015

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Filed Under: Down Syndrome, Gillian Marchenko, Uncategorized Tagged With: Gillian Marchenko, parenting a child with special needs, parenting special needs, special needs, special needs medical concerns

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