October is Down syndrome Awareness Month

October is Down syndrome Awareness Month

This month my challenge, to you and myself, is to create Down syndrome awareness by blogging everyday of October. It is important to share information and truths about Down syndrome to help break stereotypes and bust myths about people with this diagnosis. Down syndrome is NOT a disease or death sentence. Down syndrome is an extra 21st chromosome and that's that. People with Down syndrome are just like everyone else in every other way. The problem with Down syndrome begins with our cultural beliefs about it and does not begin with the people who have it.  

When my youngest daughter was born in 2003 we were shocked when we were told she might have Down syndrome. I was twenty four and not at risk of having a baby with Down syndrome, right? Well, that busted a myth. When I was pregnant, the only things I remember hearing about Down syndrome was that women over forty had a higher risk of having a baby with Down syndrome. That is still true. What I never heard though, was that the majority of women in their twenties and thirties are the ones having children most often, so they are the ones having babies with Down syndrome most frequently. Never once did I consider that I would have a child with Down syndrome.    

It only took us a matter of moments to ask the question that immediately came to our minds. What does this mean for our daughter's future? All the things that meant Down syndrome to me at the time rushed to my mind. I didn't know it, but my truths about Down syndrome were really stereotypes. The people with Down syndrome I imagined, didnt have real and full lives. What I thought was factual about people with Down syndrome was false. In reality, I knew nothing about Down syndrome. My inaccurate perceptions were all I had and not what I needed to begin celebrating the life of my little baby girl. Thankfully, my husband had real experience with individuals with Down syndrome and our doctor told us that our baby's future was what we made of it.   

We quickly realized that our baby had had Down syndrome the moment she was conceived. She hadn't changed one bit and our love, dreams and future for her shouldnt either. The way we thought of her before Down syndrome, what we expected from her as our child, and how we raise our children needed to remain the same. If we altered ourselves we would be altering our child's life. She would lose her identity as our daughter and become society's skewed idea of a person with a Down syndrome diagnosis. We wouldnt give up our dream for our daughter's life, and made her the priority, not her medical label.           

  

We began on an unexpected mission to make her future real. We decided that no one would determine how our daughter's life would be except us. So we researched Down syndrome online to become experts ourselves. It was impotant to us that we knew as much as possible so that we could make informed decisions. We didn't want to just trust what we were being told, we wanted to know if we should agree or not with what was being said about our baby girl. There was no better time than the present to begin to advocate for our daughter, and what we believed was right for her, just like we would for our older daughter.

Let's just say the day our youngest daughter was born didnt turn out how we expected. However, we knew in our hearts that we didn't have to buy into anything we didnt want to. Even though that day I began with a bias about Down syndrome I ended it with becoming educated about the diagnosis. We didn't let all of the possible medical concerns bring us down, we didn't let other's pity marginalize us, we didn't feel sorry for ourselves or our daughter, and we just didn't feel like we needed to cope with a loss. Nothing was lost and we gained so much. We gained a beautiful child, we gained Down syndrome awareness, we gained strength in our family beliefs and values, and we gained hope for the future. Down syndrome went from a moment of fearing the unknown, to precious hours of getting to know our baby, to a day of unconditional love that made us fearless.

Down syndrome is not the problem. The biggest issues we have ever faced are the misconceptions that other people believe about Down syndrome. The hardest things we have had to deal with are people's hurtful words. The toughest times we have had are making sure that our daughter receives every opportunity that every child without Down syndrome receives. Yet those times have also benefited us and others by helping fine-tuning our advocacy skills and being able to share our life. The tough times will never, ever amount to the all of the wonderful times we have had. The challenging moments are far and few between in comparison to the last eight years of heart warming memories, joy, growth, and more love then we ever imagined possible. Down syndrome has been our key, that has unlocked the life we share today.