As A Parent Of A Down Syndrome Child: What I Didn’t Do

As A Parent Of A Down Syndrome Child: What I Didn’t Do

A Down Syndrome Child Is A Challenge: Positive Steps For Parents Of Down Syndrome Children

1. i did not let the voice of disappointment and despair bring me down. Challenge came from some of the closest people to me. Once the blame and fault finding died down, true parenting began.

Down Syndrome Trust Receives Check From Wellness Committee: Local Support Helps Parents Of Florida Keys Down Syndrome Children.

2. i did not allow negative foreshadowing to win. I entertained the thoughts because they were mixed up with the emotions, but I let them go, they come back, even 10 years later. Accept the life within your hands.

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2015 Fish Hook Logo Based on Captain Troy Mell’s Design.

3. i did not stop loving her, how could anyone stop loving their child, especially one with such a gentle soul


Laila Jones ‘2 Shoes Walker’ 2014

4. i did not stop living, running, adventuring, being a mother, nor did her family or her friends, they faced the challenge with aggressive brave hearts and hope;  they cooked hundreds of burgers and hot dogs

Florida Keys Down Syndrome Educational Trust Co-Founder Joe Jones leads the grilling team; Jacob Dillon and Blye Hoffstetter.

5. i did not stop hoping others would learn from our experiences, I shared my ideas and we made a charity to help others with the same lovely, beautiful children, all over our community, from Key Largo to Key West

KODAK Digital Still Camera
Dance Factory Key West, Includes Alysia Lopez, white on left and Amber Russell, white on right.

6. i did not give up on the rest of humanity, instead of letting it push me over, I stood my ground and slowly, surely, it shifted to fit to us and our new Down Syndrome daughter, the right people came into, and stayed in, our lives.

Shawn Burchfield and Tracy Carter, FKDSET Board Of Directors, Volunteers and Moral Supporters for DS Families.

7. i did not fail to see the beauty of those around us, especially the beauty of those who were brave enough to ask for help for their Down Syndrome Children.

KODAK Digital Still Camera
Diane, Amber and Kaitlyn Russell and Samantha Hall, Dance Factory Key West, 2014

8. i did not become jaded, angry or bitter, Laila managed to keep me centered, she managed to bring us all compassion in a world often devoid of ‘bash and splash’

Florida Keys Down Syndrome Educational Trust, Bash N Splash at Marker 88 Beach, 2014 World Down Syndrome Day, March 22nd.

9. i did not leave her out of life, but dragged her along with the rest of the two shoes walking fast, and made her keep up, and she did, and she does, never give them a crutch, when their own two feet will do.

Adventure IS Monica Gibson

10. i did not deny her existence, or try to change her face with surgery, fix her brain with chemicals or make her different….only made her keep up with the walking pace of the rest of us, her metabolism is slower, her heart was weaker, she needs 100 times more effort and more time and more patience, but slowly you’ll find the people around you that can help.

One Response to As A Parent Of A Down Syndrome Child: What I Didn’t Do

  1. Checking in with you Nada, you are amazing, and working hard for these children is a great labor of love. One day someone will find the money to pay you every penny your effort has been worth. I hope to be that person, we shall see what this year brings in terms of finances. Here is hoping for more funds for services for DS children in the Florida Keys, and let’s show the world that it could follow suit.

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