"Down Syndrome Awareness Month"

Lucas and I were just thinking about trisomy 21 and the idea of raising awareness. Many local and national activities planned include an element of societal education, whether it be a "walk" or a group activity such as a dance or a swim. Last year we attended one such event, and I must say it was a wonderful day, there were hundreds of people in attendance - all there to show love and support for a family member with trisomy 21. Despite the celebratory atmosphere, I left the event feeling a touch empty - who were we supposed to be bringing awareness to? Outside of other families who gathered together to celebrate, there were no other groups in attendance. I wasn't sure of the action plan - or the message.

My idea of awareness is enlightening those who do not know - and may not have ever had the opportunity to know - what it means and does not mean to have trisomy 21. Educating new parents about hard earned knowledge to make their journey a bit smoother and describing a true reality that they can not find in books. Telling new parents that the devastation is real but not lasting, their days will be long but their years short, preparing them for the overwhelming instinct to find answers to questions that will help their child achieve and be well, and the absolute disdain for any opinion that seeks to limit their child.

I knew what it meant to be a mother and I wondered in the earliest of moments after Lucas was born how things would change - how I would have to change. Three years later I want to let new parents know that nothing changed. I still lay my head down at night and systematically check off every concern, achievement and "to do" for all of my boys. I create schedules and lists to accommodate everything that needs to be done. I cry when I see one of my boys hurting and I discipline to make sure they grow up to be good men. I refuse to let any of them back out on a commitment, break a promise or sell themselves short. I provide opportunity for them to learn things they wont need to know for some time and love to watch them succeed. There is no difference between Noah and Ryan and Lucas. They all get all that I have to give.

I know the prospect of raising a child with "special needs" is frightening, but truthfully, we can not know the future for any of our children. We will be faced with challenges and difficulties, successes and failures. I find that at the times I am needed most, I have the most to give.

Instead of attending a walk or a party, our family will be raising awareness by example...on the playground, at preschool, at church, in grocery stores, with friends and family. I will speak and write. Most importantly, I will continue looking and searching for ways to help my son be well and achieve and share that knowledge with anyone who will listen.