Jenna wrote this as a guest post for the blog Hope and Coffee for World Down Syndrome Day. Be sure to check out this wonderful blog!
I was 18 months old when Lauren was born. On that day, I not only became a big sister, but I joined the Down syndrome community. Describing what it is like to be a sibling is like trying to describe a color– it’s just who I am.
I don’t remember when the doctors told my parents they could just leave Lauren in the psych-ward instead of taking her home. I don’t remember when Lauren was turning blue because her heart wasn’t fully developed or when my parents fought with the doctors because they believed that she had more than a few hours left to live. I don’t remember the school pushing back on letting Lauren be the first fully included child with mental retardation in our district.
But despite what I don’t remember, I know that I am who I am today because I am a sibling.
Growing up with Lauren I have learned never to under estimate people. I often assume people will not be understanding of Lauren’s needs. She approaches them with a big smile and asks them her favorite question (regardless of the time of the year): “What are you going to be for Halloween?” I have watched people light up as they answer her and join the Down syndrome community.
Granted, not every day is a good day. I wish I could tell you that all people with Down syndrome fit the stereotype of smiling all the time, but Lauren has different moods just like anyone else. In 2005, Lauren received a dual diagnosis of depression-psychosis, and our days have been filled with highs and lows since then. Even as we celebrated Lauren’s 24th birthday last week, the moments of her wearing her crown proudly were followed by moments of her being violent. Throughout it all, my family stood together. We continue to build off of the strength that my parents instilled in us from when Lauren was born. We are a close family who knows the importance of standing by those that you love and embracing every smile.
My extended family, along with friends, have stood by and supported Lauren over the years. She has inspired me to give back and work to make sure the community stays strong for Lauren and anyone else who rely on it.
In 2006 I started volunteering Camp PALS, a week-long sleep away camp for young adults with Down syndrome. My sisters joined me at PALS – my youngest sister Kerri as a counselors and Lauren as a camper. In 2011, my fellow counselor Brian Atlas and I realized we needed a program that was more mature and geared towards adults with Down syndrome. We started LiveUp Programs because we wanted to create an experience that emphasized life-skill development, social development, and giving back to the community.
This year we are running three LiveUp programs in Philly, San Diego and Washington D.C., where we will welcome 20 participants and 26 staff members to each program! The Aidikoff sisters will all be in attendance to continue to support the community we love.
We are all here today and are who we are because of each other…and we are proud of it! So I hope you can join our family and the Down syndrome community by smiling with us asking yourself this day in March – What am I going to be for Halloween this year?