Tuesday, January 8, 2008

Down Syndrome


I call my beloved daughter with the extra chromosome my earth angel. She recently became a teenager. She loves cats, DVDs, singing at the top of her voice and everything I cook. I am hesitant to post a picture of her here. There are EVIL people out there who steal pictures of children with special needs and use them for unspeakable purposes.

The facts about Down syndrome can be found here

The facts don't tell you everything though.

Here is what I experience as a mother of a child with Down syndrome:


Unconditional love
Uncountable I love yous
The best hugs on the planet
Joy and laughter
A new sense of wonder in God's creation
A slower pace
A glimpse of heaven when I look into her eyes

I've tried over the years to put my thoughts to paper about my journey with her. I can never accurately describe our journey and how it has made me a better person and brought me closer to the Lord. Perhaps it is because she has given me a vision of the world as it should be - a place where everyone loves unconditionally. She lives Matthew 22: 37-40:

"Jesus said unto him, Thou shall love the Lord thy God with all thy heart, and with all thy soul, and will all thy mind. This is the first and greatest commandment. And the second is like unto it, Thou shall love thy neighbor as thyself. On these two commandments hand all the law and the prophets."

She is the most powerful teacher I have known. She has taught me so many important things about living and loving because she lives her life this way:

Pray first when things go wrong.
Thank the Lord for all good things.
Always say your sorry from the bottom of your heart.
Seek Jesus in everyone.
Delight in the simple things and let go of the small irritations.
Make a joyful noise - it doesn't matter to God if you can't carry a tune.
Patience flows - everything comes on her time, not mine...sound familiar?
A hug cures most hurts.
IQ is immaterial.
Joy is expressed with a cheer, arms raised high and "cabosing" - a word she uses for a happy dance.
When people stare, smile and wave.
Smile and greet everyone. If they don't respond, it is their problem. If they respond, she has a new best friend.

This child has an amazing ability to see into the heart and soul of most who take the time to know her. She has more friends than I will ever have on this earthly journey. At church camp last summer, she got an award for the best example of living a Christian life. It was said that she lets Jesus live in her and work through her. It validated my thoughts about her. It is sometimes said that parents of children with special needs romanticize their existence with their child with special needs but others can see it in her as well!

I love the following passage from a book entitled, The Clowns of God, by Morris West. In the book, a deposed pope has gone through many trials and tribulations and it is time for the Second Coming. When he meets the Returned Christ, the former pope is afraid and unsure - much like the apostles when Christ first rose from the dead. This passage takes place in a mountain hideaway where children from a school for Down syndrome are among those present. The Returned Christ is speaking about one of these children as He holds her.

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you - eternal innocence. To you she looks imperfect - but to me she is flawless, like the bud unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for you own good fortune...More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand...I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"

Many parents are devastated when their child gets a diagnosis of Down syndrome. Approximately 90% of babies diagnosed before birth are terminated. Just thinking about this makes me weep. Oh, what the world doesn't know...

2 comments:

Barbara Frank said...

Amy, what a beautiful post! I can attest from my own life that everything you've said here is true. How delighted I am to have found your blog!

Amy said...

Thank you Barbara - I'm a fan of yours too!!!