Before my son was born in 2006, I never gave the month of October much thought. For me, it was my busiest month at work because of Halloween, it was my husband’s birthday month, along with other family and friends’ birthdays and before I knew it, it was over. I certainly had no idea it was Down syndrome Awareness Month, or that such a thing existed. The last fourteen Octobers, though, have taken on a whole new meaning for me.
In my first 40 years the words Down syndrome were rarely, if ever, uttered by me or any of my friends or family. On June 28, 2006 it became the heart of our lives. It was the day Nicholas was born and those words were uttered to me as a nurse laid him in my arms. I will never forget the fear I faced those first days, weeks, months. The fear of being a first-time parent was suddenly nothing compared to the fear of raising a child with an unexpected diagnosis, one that I perceived to be restricting, limiting, and with no future. I quickly learned my knowledge and “awareness” of Down syndrome was completely wrong. I came to realize in those early years my purpose in life was to make so many more people aware how wrong the stereotypes and perceptions of those with DS are.
There are many who are afraid of DS and think it is something rare. The fact is, DS is the most common genetic condition. One in 691 babies are born with it, or about 6,000 births per year. Current estimates state there are over 490,000 people with Down syndrome living in the US today. These individuals own businesses, graduate from high school and college, have jobs, live independently, and most importantly, they are contributing members of our community.
I’ve learned there is no limit to what these individuals can do, I’ve learned they are more alike than different, they feel emotions, want respect, want to be given the same chance to play sports, be in a classroom with their peers, work, be independent. While there is progress in raising awareness about the misconceptions, we still have a long way to go. For those who know Nick, they see that DS does not stop him from living his best life right alongside others who are neurotypical. He has opinions, likes, dislikes, strengths, weaknesses just like you and me. DS does not define him; it is a part of who he is. In his 14 years, Nick has accomplished so many things – horseback riding, surfing, baseball, basketball, swim team, Cub Scouts, snow skiing, hiking, bike riding, video games, and even taught himself a front flip on the trampoline – that one makes my heart stop! This Fall as he starts his freshman year of high school, he is taking on Water Polo too. Many things are difficult for him and take longer to learn, but let’s be honest here, we all can be more patient and tolerant of others, can’t we? (Definitely two things I have learned from my son).
I have always loved taking photos of everything in my life. In retrospect, as a teenager, I was “scrapbooking” before scrapbooking was a thing – cutting out magazine headlines, pictures, words, using stickers etc. to enhance the album pages. I stepped away from it for years when life got in the way, however, after Nick was born, I constantly snapped photos of everything. Partly, to maintain a sense of normalcy; for me, the photos were proof he could still do what any other child could do. And it gave me a reason to go back to making albums, someplace where I could look back at those photos and remind myself, that while this is a different life than I ever imagined, it is still filled with fun, adventure, happiness and success. Over the last 10 years. I found new meaning for my pages. They are a voice for my advocacy. Through this digital world, which I love, I am spreading awareness about Down syndrome through pictures that, despite a diagnosis which to many seems limiting, it truly is not. If I can change the perceptions of even one person through my stories of Nick, then maybe they can change another’s. Slowly more will come to see beyond the disability and focus on the different abilities. And maybe someday an “awareness month” like this will not be necessary…. I can only hope.
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