Down Syndrome Awareness Month

October, 2010...a month with so many reminders...a reminder that the holidays are just around the corner, another month closer to the end of yet another year, another day of our Indian summer with the hopes that cooler weather is soon to come and of course a month that holds so much meaning to me....Down Syndrome Awareness Month.
As a mother to a child with Trisomy 21 I feel in my heart that as part of my love for my daughter, it is my honor and privilege to bring awareness of Down Syndrome to all I can. Bring awareness not only about the facts and details of what it means to be born with Down Syndrome, as most of those can be found within the pages of a book or sites on the Internet. The awareness I hope to put out there goes much deeper then cell structure, eye sight, possible medical issues, and learning disabilities. I too wasn't aware of all the medical complications and worries that come with a child like Preslie....surgeries, tests, doctors, cancer, therapies, special need classes, clinics, support groups and so on....those are what I do from day to day, those things are what i worry about as I watch my little girl grow. But those things don't define my Preslie, they don't precede her, they don't show the world what she's made of...they are just part of our life now.

What I want people to think of when they hear the words Down Syndrome or Trisomy 21 is courage, love, overcoming, teacher, warrior, strength, purity , joy and perfection. Preslie has had a long, complex and often difficult 2 years. There have been many illnesses, countless doctors appointments, endless tests and several treatments and surgeries, and heaven knows the struggles Preslie have faced pale in comparison to so many others with the extra chromosome. We have prayed for many of our friends fighting heart complications, waring against other very serious illnesses, and even the tiniest of people, winning the fight against cancer. These things are part of the fear that entered into my heart the day Preslie was born and continue to creep in from time to time as we don't know all that we will face with our little princess. However, there are countless of other perfect little things about my little girl that supersede all of the fear and worry, all of the struggles, fight and illnesses.
Like the smile that shines from her dark room each morning I go in to take her out of her crib - even on the mornings after the most restless or sleepless of nights...the way her eyes sparkle every time she smiles...the curl of her bottom lip and the 'mwwahhh' sound she makes as she leans in for kisses, and how she dishes them out especially the moments I need them most. The determination she has when she cant figure out the milestones that I used to take for granted....the speed she has as she scoots through the house after her brothers and the sneaky little giggle that follows when she knows she's being chased. The way her body automatically bounces and moves as music reaches her ears, and then the biggest smile. The mischievous manner in which in a split second she'll scoot from my sight and find the nearest open bathroom and empty any and all cupboards she can open either into the garbage or tub in no time at all. the sweet way in which her arms curl out in hopes to be scooped up into my arms and then with the most sincere love, wraps her arms around my neck, nestles her head to my shoulder and gently pats my back with her tiny hand, if simply to say 'I love you'. The excitement she radiates at the simplest of things - bubbles being blown around her, twinkle lights within her sight, her brothers walking in the door after school, a water fountain that was stop to let her feel the water cascading down and run across her fingers, nightly bath time, and our morning walks to school...the way she takes every opportunity as the family dog passes by her to reach out and get one touch in, before he realizes he just got too close and hurries off and she does so with the biggest of smiles. The sweet way she gives hi-five and each time lets out the same sound effect of 'ahhhh' with a grin like she was just included in the most elite of clubs.
She may not talk, or walk, or even stand. She cannot interact with her siblings or the other people that love her like a normal 2 year old can, she hates to be in crawling position, and doesn't understand most of the things we say to her. She is behind by over a year on some of her development, she cries out of frustration because she cant communicate what she wants, but she is simply perfect in every way. She radiates a love and pure goodness every moment she's on this earth. She brightens every room and ever life that's around her. She makes me a better mom a better friend, a better person every day. I no longer take anything for granted, I no longer complain at all the little things that get me down from time to time. And every day I thank my Father in Heaven for the love and pure adoration I have for my little girl, for someone that people don't always understand, for someone that often time causes people to fear or worry because they haven't taken the time to get to know her, my Preslie, my angel girl.
That's what I want people to be more aware of this month...all the people around this world that were given an extra chromosome are some of the people that have ever or will ever walk this earth!

I am more aware in every way - not just in all the terms and lingo I wasn't used to before, but aware of all the sweet, simple things in this life I took for granted. I am more aware in my strength, in my weaknesses and everything in between. I am more aware of real struggles, and real triumphs. I am aware of what perfection looks like - blue eyes, honey colored hair, the sweetest of smiles....I am now aware how very blessed I am every single day because of my little girl. A blessing I never knew I wanted, but needed oh so much!