I remember when I got my first positive pregnancy test. Although its been over 5 years now, the memories are so strong I can still feel exactly how I felt that night. I took it at 1 am, a random feeling came over me that I should take one. We, Charlie and I, stayed up till nearly sunrise, talking, crying, both excited and scared shitless. The memories from that night are crazy intense... maybe because I have replayed it in my head so many times its like a well loved movie. Specifically, one certain thing came to mind from that night. Siting in the hall across from Charlie, I told him I feared that God was going to give me a child with special needs. I told him that I was never comfortable around people with special needs and I was scared that God wanted to grow me in a way I did not want to grow. And when I say special needs, it was Down syndrome I was picturing.
Well, we did not have a child with special needs that pregnancy. No, we had twins. And that was a whole different kind of fear. And oddly enough, when we got pregnant again two years later, not a thought of worry of there being anything wrong with the baby went through my mind. I was just praying for there to be only one baby in there this time.
And then came the walls crashing down. Heart defect, clubbed feet, Down syndrome.
I knew three people as a kid who had Down syndrome. But if you had asked me when I got Fiona's diagnosis how many I knew I would have only told you two. Only two of them came to mind when I used to think about Down syndrome. They were both boys, one just a few years younger then me and one about ten years younger. They were both very aggressive.
They did not have a good sense of personal space. And the whole becoming a man but not understanding or lack of control caused some issues... the older of the two could be just inappropriate sometimes. But yet everyone who really knew them, unlike me who just knew from a distance, loved them. Adored them. I never doubted they were great people, I just was afraid to befriend them. I never questioned their right to be a part of anything, was never mean or made fun of them, but I kept my distance.
I knew this was an area my heart had not been softened too. Or maybe, more so, my eyes just had not been opened. And that scares the crap out of me now that I am on the other side. I fear people fearing to befriend Fiona. That people may be uncomfortable around her or find her behavior repulsive. The baby stage is so easy. But one day my baby is going to be an adult. And while she does have potential to do great things, most likely there will be some sort social awkwardness. The point when what's cute as a kid becomes uncool, embarrassing as an adult. Things that I know I will admire of Fiona, but things that our cruel society will judge her for.
I have no clue where those two boys are today, how they are doing or what they have been able to do in life. I am so ashamed of how I distanced myself and how I feared them. Like I said, those that actually knew them weren't afraid of anything. Their aggressive boy behaviors needed some direction, but really beyond that, they were good friends, great kids and the stereotypical life of the party. Honestly, my ignorance of how to befriend them is what caused all the confusion. Something that drives me to talk to everyone and anyone about Down syndrome now- to help abolish that ignorance in others.
But if you remember, I said that I knew one more person with Down syndrome. I don't know how she slipped my mind for so many years. In third grade, a new girl came to my school. (I went to a small private school, and just recently I realized I never had any kids with special needs at my school. Not because of discrimination or anything, but simply most private schools cannot offer the one on one assistance or therapy programs the state can.) Anyway, I became friends with this girl, Tiffany, and she had a little sister who had Down syndrome. She must have been in kindergarten at the time and I knew her until Tiffany changed schools in middle school, so Katie must have been about 5th-6th grade the last time I saw her. Sometime after Fiona's diagnosis, I was on Facebook and saw Tiffany post something about Katies high school Prom. That's when I remembered her. And a flood of comfort came over me as only good things stuck in my memory about Katie, unlike the two boys I had known. I had just adored her. I remember her trying to play with us and keep up with us, like a typical little sister. I remember not really noticing Down syndrome, but just Katie. Which is why I think she did not come to mind when I used to think about Down syndrome.
I don't think the apparent obvious boy vs girl is the answer to why I felt so differently with my two experiences with Down syndrome. I think it was more the kind of relationships I was able to have. With the boys, I was always an outsider looking in... making assumptions and judgments from a few encounters. With Katie, I had the privilege to really be around her. To watch Tiffany and her interact and witness the amazing sisterhood let alone friendship they have. I got to see Katie as Katie, not just as the girl with Down syndrome, which was how I knew the two boys. And just a couple weeks ago, I got to reconnect with Tiffany and Katie when we were in Michigan, and to introduce them to my little designer gene princess. It was great to see Katie, all grown up, who is beautiful, charming, and actually seemed much more mature then most 21 year olds I know. It was also great to chat with her mom, who has been an amazing advocate for Katie and a role model for me.
I know the other two families were incredible advocates for their boys. I know that their siblings were super close and supportive of them. But as a young girl, ignorant and unaware, I didn't give them a chance because I simply did not know them. This makes me a huge advocate for inclusion in the class room. While I feel this would really benefit Fiona both academically and socially, I also see it really benefiting the other kids as well. Getting to be around and know other kids with all sorts of disabilities opens minds, eyes and hearts, creating a more compassionate and considerate, as well as educated, community. I have always felt while my book education was top notch at a private school, that my real life and social education was severely neglected. My public school friends got to experience so much more life then I did, both good and bad, which there is both positive as well as negative things in that. Makes deciding what is best for my own kids very difficult. One more year before we have to cross that bridge :)
I am glad that I had some experience with Down syndrome prior to Fiona. I know some moms who now have a child with Down syndrome never knew a single soul with it prior. I feel I am aware of the stereotypes and attitudes, considering I used to be guilty of them, as well as the regret in not understand myself as a kid and see the importance of opening eyes with everyone I can. I am very insistent in surrounded Fiona with as many people as possible, giving everyone a chance to know her, and not just her label. The biggest enemy is the world. Without everyone else, life with Down syndrome is great. So I want to help Fiona as much as possible by showing the world what Down syndrome really is and how to be more inclusive and understanding of different disabilities. Or better yet, to help them not notice the disability as much as they notice the ability in Fiona.
Linking up with another blog hop, and excited for this topic. Its something that I have attempted to write before but never felt I could explain it just right. Thanks for the push, Meriah :)