March 21st, a day to honor those who carry with them three copies of the 21st chromosome. It’s also a day designed to spread awareness. This year, I’d like to spread awareness about perception.
Today always serves as a bittersweet reminder of what I lost, but also what I gained. I’d love to say that over the years the pain of my loss has subsided, but in all honesty, is hasn’t. Unfortunately, there isn’t a day that goes by that I don’t grieve the loss of having my little gymnast or dancer, one that just might leave her mark in this world.
But at the same time, when I look at my big picture, I can sometimes actually see through the fog that I have gained an even harder working gymnast or dancer that might make an even bigger mark in this world.
In a different manner, than I had originally imagined.
Getting over my dream isn’t as simple as others would have liked it to have been for me. But every day I make it a hair closer as I trudge through the murky waters. Some days end with me actually managing to gain one step towards accepting the dreams - that were been chosen for me, not by me.
Yes, I understand that those "believers" would tell me that I don’t have a choice in my dreams, it is simply my job to accept what has been created. Please forgive me for not following your lead, but let me give you my point of view, my background.
I have been a self-creator of my own dreams since the time I was three years old and diagnosed with a severe hearing loss. Time after time, the report would be, "She wont hear, she wont talk, she wont go to school, she wont make the dance team." The list of all the things that people didn’t believe I could do goes on.
I had two choices.
One: I could listen and trust that the higher power had created my destiny; I could listen to these so-called “knowledgeable individuals” and believe they were correct.
Two: I could dig deep within, believe in myself, defy the assumptions, and defeat the stereotypes and statistics placed against me.
I must say that after 35 years, I can confidently say that I am an absolute PROfessional at defeating stereotypes and statistics.
Four years ago, as I was about to give birth to my first baby girl, I really believed I was done fighting. I was ready to toss in my shoes, stop pushing to conquer the unthinkable, and live life just it was presented.
I have had many families along my journey write and tell me I should accept this "chosen life." That I need to move on and not be so angry….
But these judgmental strangers: Have. Not. Walked. A. Day. In. my. Shoes.
On January 5, 2010 I wasn’t able to toss in my shoes like I had hoped. I wasn’t able to stop fighting for myself like I was anxiously waiting to do. Instead, I had to put those worn out shoes back on, tie them even tighter, and begin this journey all over again - fighting harder than I have ever had to fight before. I not only had to defy statistics and stereotypes about Down syndrome, but perceptions about Down syndrome too.
And I tell you, changing perceptions is the absolute hardest challenge of all.
Everyday, people superficially look at the size of an eye, the position of an ear, the shape of a tongue, or the style of language spoken - and are quick to judge the full potential of a human being.
This is wrong and must stop.
So must the use of the word retard to refer to our loved ones.
And while we are at it, if I am shaking my magic wand, I’d love to put an end to internet bullying.
Specifically the comments made about my innocent four year old child.
Comments from adult
who have never even met my daughter.
Really people? Adults have to ridicule innocent children to make themselves feel better? I don’t ever waste my time commenting back to these individuals. It was the fight they were after, and as I mentioned, I’m tired of fighting. So, I ignore these hurtful comments about disfigured faces, aliens, and abortions.
Let me ask you this?
How many adults with normal children have had these words used in reference to their child? I absolutely envy those parents who are able to live life not having a clue what we special needs parents experience on daily basis. I often read about their biggest worry being a poor grade on a report card, missing a word on a spelling test, or getting cut from a basketball team.
I’d give anything to have those worries.
As a parent I can fix those. We can study harder, shoot more hoops, run more miles, have longer talks, apply those lessons to life and learn from them. To me, those things are fixable – because they lie within our selves, and we can be self-creators of the outcome.
Changing perceptions of others, unfortunately, is not a self-creation.
It is a creation that I can education others about, but it’s a creation that I personally can not change. My only choice is to find the perfect ground, build the foundation, and hope that others will follow.
My goal is to find it within me to celebrate and educate others on this day. It is days like this that I am gently reminded of how hurtful the world really is and I am only one person fighting like crazy to change perceptions. To teach others that what is visible on the outside has absolutely no indication of what the inside is capable of.
On this day of awareness, I hope to lay the groundwork for others to realize how vital perceptions really are.
I challenge you to analyze your first impression. Take those initial impressions and toss them. Don’t let them count. Get to know a person and spend some physical time with them before you decide if they are cute, smart, likable forgiving, compassionate, lovable, humorous, and so on.
That person deserves way more from you than a one-glance, two-second perception.
I promise by doing this, that your eyes will open wider, your heart will grow bigger, and your self worth will rise higher than you knew was possible.
And one perception at a time, starting with you, the world will begin its transformation.
The people need this, I need this, but most importantly, my daughter needs you - to do this.