Sienna’s First Advocate

If anyone ever wonders how to treat Sienna, they should look no further than her sister.

When Sienna rocked our world with her diagnosis, some of my immediate concerns were in regards to Haley. I never want her to feel like her needs are not important. Those first few months of Sienna’s life were challenging. We had therapists, lactation consultants, and a plethora of specialists coming in and out of our home. Haley happily went along without complaining. She just wanted to hold her sister and love on her.

When Sienna was 6 weeks old, we had her first Early Intervention evaluation. There were 3 therapists, our coordinator, my cousin and myself all making goals for this tiny 6 week old baby. I watched Haley playing by herself in the next room, and I began to cry. No one in the room knew what I was feeling. I looked at this meeting as some great metaphor for the future. I pictured Haley pushed to the side for years through meetings like this. You have to remember that up until now, it had just been Haley and me. She was my world. I thought Sienna’s diagnosis was going to ruin that. I was wrong.

What I soon came to realize was the inherent depth of the sibling bond. Haley was Sienna’s first advocate. She was the first one to accept her, all of her, while us adults still struggled. But what does it mean for the future? Will Haley always feel this deep connection or will she resent her sister? These are actual outcomes from a study done on 822 adults with siblings with Down syndrome. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with Down syndrome; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without Down syndrome. Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching. What a gift!

Haley is learning empathy at an early age. The more I watch her grow into this role, the more I realize how inherent it is to her nature. I had the pleasure of watching Haley advocate on behalf of her sister this past weekend. It made my Mom heart sing. I watched her talk to our neighbors about her sister, and her diagnosis. She may not understand the concept of DNA, but she knows that her sister is her best friend. She knows that we will have to fight for her rights, and it is something that she is more than happy to participate in.

I am going to end each of my posts this month with an inspiring quote.

“I raise up my voice not so I can shout, but so that those without a voice can be heard. We cannot succeed when half of us are held back.” – Malala Yousafzai

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The Best of Humanity Part Two

“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” -Shel Silverstein

Brian Donovan, our second keynote speaker, opens with a series of inspirational quotes, and that one brought tears to my eyes. Before Sienna arrived, I spent so much time wondering about this baby growing inside of me. I had dreams for her and our family. I constantly pictured Haley with this new sibling. After four miscarriages, we had big hopes for our future. When Sienna finally arrived, we thought we crossed the finish line. Then, we found out about her Down syndrome diagnosis. I thought it meant we had to give up those dreams. I had much to learn.

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The Best of Humanity Part One

As I walked around the hotel banquet room, I chose to eavesdrop on the conversations I was overhearing.

One woman has her arm around another mom and is rubbing her back. I struggle to hear their conversation. I overhear some words that I recognize…..”IEP, full inclusion, school.”

Some conversations are less serious….unicorns, Down syndrome awareness shirts, and prickly pear margaritas by the lazy river.

Then there are the comments that signify the entire reason we are here.

“We are finally meeting. I feel like I know you, but now I can actually hug you. I am so glad you are here.”

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