Tell me how you really feel (part 1)

(This post is being divided into 2 entries, because it is super long. Longer than I intended it to be, yet not everything I want to say.)

The last post that I wrote… it wasn’t supposed to have ended the way that it did. There was more I wanted to say as to why I haven’t been blogging as much but I just couldn’t get it out.And its just been boiling up inside of me.   

One of the reasons I do not post much is because sometimes I don’t have the same feelings as other parents with children with Ds around Ethan’s age. (I have found as your child gets older, your feelings shift as you get to experience different things in your journey.) But I am just getting to those other phases a little sooner than other parents. NO, I am not saying everyone will feel the way I feel when their kids are older. We all have different feelings and views on our children, Down syndrome or NOT.

I am an aggressive parent. A no nonsense type of parent. I expect A LOT from my children.  I believe in tough love and yes my children better have a reason to cry about if they are crying.  That is just me so naturally I am not any more different with raising Ethan. I expect a lot out of him as well, so screw you Down syndrome because I am not cutting Ethan any slack! Ok I am lying, he does tend to get babied just a tad more than his sisters were at his age, but he is too darn cute. I cave more than I like to admit, BUT I am still pretty aggressive when it comes to parenting and Ds. 

And if you know me personally, you would know how much I love my son. Not only my son, but all children and adults with Ds. I am passionate for the Ds community. I try to support not only the babies and small children, but the adults as well. It is very important for me to support other adults. One day Ethan will be an adult, and I hope others will reach out to support him in whatever he does as well. I can’t expect others to do that unless I am doing the same for other people’s children.

Back in June I attended a fundraiser night to watch our young adults in our Ds association performing some pantomime acts to Michael Jackson songs.  The acts were phenomenal, but the lack of support (from the Ds community) was bothersome. The only other people who attended were other parents of the individuals performing. Everyone seems to get excited when they see a character with Ds on tv or a child in a magazine with Ds, but when actual events are going on in your own town and you have the opportunity to support these individuals from your very own town, no one bothers to show up, is nothing short of bothersome.

 (hard to take a good pic from afar and in the dark... but they were awesome! Standing ovation from the crowd!)

Recently I put together a fundraiser shopping event with an online store that sells Ds awareness items…  it was a  6 week thing! They then donated 15% of the sales back to our local organization… Do you know how much money we made?… $23.  They had 3 sales in those 6 weeks that benefited our organization. An organization with over 1000 people, only 3 people made a purchase. One of those people was me. And I know firsthand how popular this online store is. I have friends buying from there at all times, yet in 6 weeks, I could only get 2 other people to buy from a store that sells Ds items as well as employs individuals with Ds, I wanted to cry. I was simply embarrassed. 

I hear people cry about the lack of community support and services for our children, but I definitely do not see other people jumping up willing to do more. I understand not everyone is in the position to monetary help out, but there are so many other ways other parents can make a difference. Speak up, spread the word, advocate.

That day, I simply sat at my desk for hours. Not able to comprehend anything after that. At that very moment I was at to the point of just giving up. If other parents don’t care, why should I care? But then one look at my amazing son is enough to keep me fighting and pushing. And by fighting for him, I might just win one day… and not only will we be the only ones winning, but the entire Ds community. You might just thank me for my aggressiveness later on.

(to be continued!) 

 (just some sun set pictures... always brings me peace.)