10.01.2015

Let's talk Down syndrome

October is Down syndrome awareness month and I have a month long campaign up my sleeves that will be launched primarily on my instagram and facebook page --- with some autotweet to twitter. But I don't want to keep you in the dark and what good would raising awareness be if I kept silent here?

To launch the month of awareness I want to talk about a recent virtual run I did for Toby. It was for Down Syndrome Diagnostic Network. The race fees covered the two medals (one for me and one for Toby) and then went to DSDN to help them in what they do. Are you curious about what they do? Good! I am going to tell you.

DSDN is based on an awesome concept and executed beautifully. It is a group of parents with kids who have Down syndrome because who can understand the situation better than them? No one. I am an avid believer that you really need to be in some one's shoes to understand their path. It is easy to give advice on the outside but who best can give advice and understanding to parents who have just learned their child has Down syndrome? Who best can answer those questions, feelings of fear of the unknown, and just plain wanting the best for their children? People who have been there and truly understand. This brings back a quote from a movie I saw years ago. The movie was Core and I am not going to go look up the quote verbatim but in a nutshell, a man was telling a lady she can't be a leader because she has never failed. That you need to fall down and get back up in order to lead people. Basically, you need to be able to place yourself in their shoes and guide them. DSDN does just that!

This site is amazing and the wealth of information, parent stories, links to more sources of information, tips for professionals for delivering the news, and yes, ways to donate and join the cause. What a God send! I am honored to have supported their efforts with my virtual run race fees. But this post isn't just about DSDN and my virtual race. This post is about Down syndrome awareness.

You can tell I am amped that parents are leading the way at DSDN and today I have a special treat for you. My buddy's mom shared some of her own personal thoughts and tips for others. Essentially, I asked her what she would like the world to know about Down syndrome and this is what she said:

"I would like parents/public to know that a kid with Down syndrome is more alike other kids than different. They are not ALWAYS happy. They have moods like everyone else, they just get over things faster. They want to be friends and play with your kids and can learn much from them. Please let your kids ask questions about my son. That's how they learn and how they dispel fears. Lastly, kids with Down syndrome can learn just about anything typical kids can, just at a slower pace."

Did anyone else get chills? I have read this so many times before typing it today and it still gives me chills. God knows my child is not always happy and the first time I read this was when darling daughter was having a really hard time getting over a bump in the road. Oh how I wished that bump would go by a wee bit quicker!

I am honored and blessed to have Toby in my life. I only wish we didn't have the Pacific Ocean separating us so darling could play with him and get to know him in person. Yes, she is learning a lot about Down syndrome and acceptance through our long distance relationship. I share his up's and down's with her and she shares her stories with him (via me of course). Right now, it is the best I can do but I know it is making a difference in both of our lives. I am a better person for knowing Toby. I am a better person.

Daily Gratitude: I am thankful God placed Toby in my life.

Daily Bible Verse: Above all, keep loving one another earnestly, since love covers a multitude of sins. Show hospitality to one another without grumbling. As each has received a gift, use it to serve one another, as good stewards of God's varied grace. ~ 1 Peter 4:8-10

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