Connecting the Dots of Down Syndrome

“You cannot connect the dots looking forward. You can only connect them looking backward. So you have to trust that the dots will somehow connect in your future. You have to trust in something; your gut, destiny, life, karma, (or) whatever. Because believing that the dots will somehow connect down the road will give you the confidence to follow your heart, even if it leads you off the well-worn path. And that will make all the difference. “   Steve Jobs

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Two couples decided to become parents, to go on an exciting and unpredictable adventure that would hopefully result in the birth of a healthy child. Was it just a random thing? Was it destiny, God’s will, or karma that put them on such different paths? Does this matter as long as they both reached their intended destination?

 Elijah’s Mama, Karen, delivered him 6 weeks earlier than expected, so he spent his first 7 weeks in the pediatric intensive care unit. Once Elijah went home, he had a very busy year! Between being formally adopted by his Mommy, Patricia, being baptized, having major heart surgery and tracheal reconstruction (spending a month in the hospital), making new friends at Gigi’s Playhouse, dressing up as a doctor for Halloween and playing the baby Jesus in his church’s Christmas play, he also found time to snooze a bit and chillax with his family and his dog Dory. On his first birthday, he celebrated with his family and friends (and he smashed his birthday cake to bits).

Quinn decided to give his mom and dad, Heather and Pat, a lesson in patience. After a long and difficult labor and delivery, little Quinn made his appearance.  48 hours later went home to meet his dogs, Maggie and Oliver. Quinn found time to have a pretty eventful year as well.  He took quite a few car trips to visit his grandparents and cousins, visited a farm, slept through a few festivals and parades (seen one, you’ve seen ‘em all is what he told me), swam at the beach, got his first haircut, hosted a backyard BBQ, dressed up as a spider for Halloween and made a LOT of new friends.  On his first birthday, he celebrated with his family and friends.

Although they are both being raised within 10 miles of each other, their families have never crossed paths. Elijah and Quinn were both on a journey to the same destination at the same time; their first birthday celebration. It gives me great joy to tell you that they both made it. Elijah has Down Syndrome, and Quinn does not. Both sets of parents cherished every day of their baby boy’s first year as they dreamed of lighting that first birthday candle. Someday I’m going to introduce them, but that’s a story for another day. So what’s my point?

Parenting is a crapshoot. Nobody really knows what they are doing. We all “fake it until we make it,” relying on the knowledge and support of other parents to guide us through the firsts and the fears (and there are many that first year).  The paths are well-worn for parents of normally developing, healthy children, veering off here and there to account for each child’s incredible uniqueness. What a relief that there are some guidelines! This is unfortunately not always the case for the parents of children with special needs, but fear not, some incredible human beings are blazing new trails every single day.  It would be nice if these paths could cross more often, to create a greater understanding and support for each other, because truly we all on equally exceptional and awesome journeys.

In the meantime, experienced parents and professionals look backwards and connect the dots for us in order to create new paths for us to walk together. We are more similar than we are different. It’s important to remember this.  It’s National Down Syndrome Awareness month.  Be aware of opportunities to learn. Connect the dots, follow your heart and reach out to each other, even if it takes you off the comfortable and well-worn path you are traveling. When you look back, you will see the difference you’ve made.

http://www.youtube.com/watch?v=-_-P4t2jR1g

 

 

 

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  • There is SO much truth in "It takes a village to raise a child". After losing our Dylan, the fear of NOT making it to Ian's first birthday was paralyzing. We cried as we sung happy birthday. Since then, we've become part of a group called The Compassionate Friends. It's a support group for parents who have lost children. Through becoming active with the local group, I have found my voice, my tears, my hope, my Dylan. They have helped me implent the lessons I've learned, to build me into a better person. I no longer am resentful for my loss. I am thankful for the gifts he's given me. I know for a fact, I could not have done it alone. While this sounds like a plug for TCF, and irrelevent towards Down Sydrome, it's not. Supporting each other, sharing our tumbles and our joys no matter what the battle, helps another family move forward.

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    Wonderful post. Our best friends have a little girl who is 11 months older than our son. She has Down Syndrome and was not diagnosed until after birth. After 6 weeks in the hospital, and multiple surgeries, she will be joining us for our son's first birthday celebration. Though so different, the two of them play and laugh together. Her birth also convinced me to NOT have prenatal screening, as she is as loved and joyful as any child I know.

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