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Posted on April 4, 2024 by Kimberly Ripley in disable child, Down syndrone, Kimberly Ripley, Lilly

Grandparenting A Disabled Child: A Lilly That Bloomed

Grandparenting a disabled child  – A Lilly That’s Bloomed

“I’ve been blessed to spend much time with Lilly since she was a baby. These years have been among the very best of my life.”

Proud is an understatement regarding the joy I feel in the presence of our granddaughter Lilly. Whether it’s pride for her baking brownies, clearing the dinner table (set for 12!), and putting away the leftovers, or pride for reading some tough words from her books, I can’t help but boast about her accomplishments. Of course, Lilly hasn’t come by these accomplishments alone. She has a wonderful mom and dad, who have made her the center of their lives, taught her right from wrong, and made her feel safe and loved. She both has and has had exceptional teachers who have encouraged her. And while it likely seems to many that this is perfectly ordinary stuff, it’s not. Lilly has Down syndrome, and each milestone she has made since walking at 2 ½ to working at her parents’ salon, has been celebrated for the accomplishment.

I’ve been blessed to spend much time with Lilly since she was a baby. These years have been among the very best of my life. Whoever said that having grandkids is even more fun than having kids (words I used to find offensive) was 100% correct. And it’s because we get to send her home to her mom and dad. But despite her antics – which are frequent, her sense of humor that has us all in stitches, or her infrequent bouts of unfortunate behavior – which fortunately have significantly lessened, I’m always ready to welcome her back the very next day.

There are so many things that Lilly has mastered that not all children with Down syndrome do. She speaks clearly, thanks to the speech pathologists who work with her both at and outside of school. She knows some basic math and she reads quite well. Her penmanship is better than that of my husband and a couple of our adult kids! She’s warm and conversational.

Lilly’s favorite way to ride in my car is to either read or write – and then read what she writes. I steer my car down the highway toward our home after picking her up at school and spell words that Lilly gets stuck on so that she can go on with her reading. Not a fan of story books, she typically teaches me a thing or two by reading facts about wild animals, discussing countless Star Wars characters, or trying in vain to convince me that big hairy spiders make great pets. Sorry, Lilly. They don’t! I wouldn’t let your dad have one, and you won’t have one here at Nana and Pa’s house!

“…for a few fleeting hours on a Wednesday afternoon, I was Lilly’s favorite.”

Lilly recently turned 18. Technically, she’s an adult, as she likes to inform everyone. She likely won’t drive a car or live 100% independently, but no one has told her these things might not happen. She’s been told that she can accomplish great things since she could understand. A new NDSS/CoorDown campaign called “Assume I Can,” further supports this longstanding philosophy her parents put into action.

After picking Lilly up from her school bus one afternoon recently, she told me something that brought me close to tears.

“Guess who my favorite person in the whole world is?” she asked.

“Who?” I replied.

“It’s you, Nana,” she answered.

By 5:00 that evening, she said her dad was her favorite person in the whole world. And that’s ok. He deserves it, too. So does her mom. But for a few fleeting hours on a Wednesday afternoon, I was Lilly’s favorite. And all the joy she’s brought throughout these many years came rushing to the forefront of my heart and mind. I’m Lilly’s Nana. And I’m abundantly blessed to say so.

GRAND proudly featured Kimberly and Lilly on the cover of our May 2009 issuedisabled

Click here to read


Read more about grandparenting a disabled child here

Kimberly Ripley

About the author

Kimberly Ripley is technically a retired writer and editor, but every now and then accepts a freelance gig she just can’t pass up. A wife, mom of five and a few extras, she is Nana to a growing list of grandchildren – and they are at the center of her life. You can find Kim in New Hampshire with her family, shuttling kids and hosting large family gatherings. You may contact her at kimberlyaripley@gmail.com.

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