The leading human rights organization for all individuals with Down syndrome.

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Maestro of My Heartstrings
Grandma and Dalon
Grandma and Dalon
Maestro of My Heartstrings

I picture him sleeping soundly. Angels, using snow-white ostrich feathers, sweep away nightmares of pain, thirst, and inconsolability. In the tranquility of the pre-sleep state, I watch the previous day replay in my mind---the looks my grandson gave me, the questions he asked with his eyes, the requests I misunderstood. Dalon is two years old. The bittersweet joy of being part of his life is so intense, I feel as if I am experiencing true love for the first time. I love my husband and children with all my being, but this little guy controls my heartstrings like a harsh and demanding maestro. He is unrelenting and ever so deliberate. What goes on in his beautiful little head is a mystery. Maybe the mystery of Trisomy 21 is in the added chromosomal nectar between the spaces in his genes. "Tell Grandma with your hands," I say to him. He has come to me wanting something, pleading. He cannot say words, but I know he is talking. "Look Sweetie," I say, bending down. "Use your hands. Do you want milk?" I make the sign for milk. He looks at me and frowns. I try another word, eat. He smiles and puts a tentative finger to his mouth. It's not the correct sign. Technically, his fingers should be cupped together but he is telling me what he wants. I hug him. I could not be happier had he said, "Grandma, I want a cracker." If he had been a "typical" kid, I might have answered back, "If you say Please." To him I make the sign, "I love you." I give him a cracker, broken into small pieces. He uses his fist to maneuver them to his mouth. He does his best to chew, but gags. I hold him, ignoring the mess, and encourage him to get them all out. A mess has become a simple fact, meaningless in the greater context. My tiny grandson is teaching me the greater context. A brave fighter, who a few months after he was born, a slash running the length of his baby chest, tubes poking from tummy, looked imploringly at me in the hospital room. He demanded that I help with his pain and never abandon him. His message was crystal clear. Tonight, as I relax into sleep, I watch the angels working. They have been sweeping away nightmares of open-heart surgery for two years. Their feathers are bare nubs rubbing away the last fragments of his delirious outcries. He wakes up less frequently. But who can know the struggles that lie ahead of him? Who will protect him from the pain caused by prejudice and ignorance? His parents will, I know. And I will, I say to him. I am getting older every day. Someday I will lead an entire orchestra of angels, conducting, as you, my little maestro, have taught me' with vigilance and determination. And you, my little darling, will forever sleep in peace.

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Comments (1,000 character limit)

Claudia costa targino, Brazil,
6/1/2011 10:00:39 PM
What a beautiful story.... Very emotioned... Made me cry.

Dane, United States, CA
6/2/2011 11:11:43 AM
I am so lucky to get to kidsit my nephew so often!!! Great writing!

Shanny, United States, OR
6/2/2011 1:12:46 PM
Thank you for sharing this beautiful story! Dalon truly is an angel who spreads love and happiness! I am blessed to be his auntie and to learn all he has to teach me about life.

Trish Hastings, United States, CA
6/2/2011 2:36:24 PM
Absolutely beautiful....Dalon has obviously been blessed with a caring loving family!

Alexandre Franklin , Brazil,
6/2/2011 2:46:55 PM

6/3/2011 2:24:27 PM
Love you all!!!

maria lais targino uchoa, Brazil,
6/3/2011 7:21:55 PM
I know how much love she fells about . She deserves. Ilove you Pam

sherry sherman, United States, CA
6/4/2011 1:56:51 AM
awesome story.. so heart felt and inspiring

Jill, United States, CA
6/17/2011 12:36:28 AM
I love this little man....I love his family!

carlotta villarreal, United States, CA
6/25/2011 2:07:46 PM
Beautiful, love you Dalon

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