Wednesday, October 1, 2014

October is Down Syndrome Awareness Month – 5 Things I Know Now

It has been quite awhile since I’ve written here. I need to get better at it. There is no better time to start back up than for Down Syndrome Awareness Month.

When we first found out that Cody would have Down syndrome, we knew little about Down syndrome. We were worried about the journey. Worried about his future. I was worried that I would not be the voice he needed me to be.

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Now, 8 years later, I can look back at those worries and say to myself, “Woman! What was wrong with you?” Smile

I know the feeling that a prenatal diagnosis can bring. I know the worries of “am I ready for this?” Honestly, are we ever ready for a child, typical or one with special needs? I know that all the parenting books in the world didn’t prepare me for DJ to walk at 8 months, much more climb and jump off everything in sight by 9 months!

If you or someone you know has received a prenatal diagnosis or even a birth diagnosis of Down syndrome, I am more than happy to speak with you. You are not alone. The potential for your child is far greater than what a medical book will tell you.

If I could go back to 9 years ago when we received the diagnosis, I would tell myself:

  1. You WILL be that voice for him. You have it in you. I hate confrontation. I dislike arguments. When it comes to what is best for Cody, though, I will follow my mother’s intuition and fight for what is in his best interest. Cody has proven his potential time and time again. I will not be the one to stand in his way of being who he was meant to be.
  2. There will be challenges, but he will bring you more joy than you can imagine. I have been through more emotions in these 8 years than I have in my 41 years of life. I have watched my baby endure heart surgery. I have watched him fight for life on a ventilator for 28 days. I have witnessed him terrified to go to school and made the choice to home school him so that he can receive a proper education. All those challenges, though, are worth every ounce of joy that that little boy brings into my life. When I’m feeling down, he is the first person to offer a hug and an “it’s okay”. His heart is in his smile.
  3. Follow his lead. He knows what he is capable of. Even when you and everyone else may doubt him, he will often prove you wrong.
  4. Remember every moment, even the bad ones. There will be many moments that you will want to savor. There will also be those that challenge your heart. In the future, those challenges will remind you of just how far you both have come.
  5. Enjoy the journey. It isn’t about how fast you get there (whatever there may be). Just enjoy the journey. Savor every moment with him. He will grow up faster than you want him to and you know what, he will be okay.

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