Epic Fail

To say that I failed at 31 for 21 would be a lie. My failure was EPIC! Like, non existent.

So here's the deal. I am OVER Down syndrome. Well for now, in the sense of other people. I think I have PTSD from the Buddy Walk. I am not even kidding. My husband wore his shirt to bed the other night and I literally couldn't look at him. I haven't put the girls' shirts on them since the actual walk. Well, maybe once, to paint in, but that was because they had on cute clothes that day.

The entire event and weeks leading up to it were so very stressful for me. Not to mention the unnecessary drama that came along with it. But what really got to me the most were the behavior of many of the people. I have never in my life experienced such ugliness and just plain rudeness and   that's saying a lot coming from someone that worked in retail and bars most of my life.

I get it. You paid a fee, expected something in return. But it's a FUNDRAISER and the amount of people that forget that you are volunteering your time for an event that your family will not even enjoy, nor will your daughter even want to be at, it stings. And that sting lasts a while.

I am slowly coming out of my funk but I have a whole new take on volunteering my time and the people of the Ds community.

So - what does that have to do with the 31 for 21? Well, for me, quite a bit. You see, in my head, I was all about blogging. Getting back into the swing of things and really making a difference. I really had it in my head that the walk would "Make a difference."

And don't get me wrong, I am sure they both do in a lot of ways. But when you have a trauma as the walk was for me, I think you see things in a different light. I also found myself bored with the same comments and stats in regards to Ds, so finding content to write about seemed daunting. Given that I had just spent about 8 months reading all-things Down Syndrome, I wasn't up for researching anything new = brain overload. I didn't want to blog about things that my readers could google themselves. So I just didn't blog at all. I found myself sharing various stories and things that were on Facebook - mostly - but I didn't offer much else in terms of anything.

It wasn't until the last week of the month that it dawned on me why I was feeling so blue about it all. I am in a different place with Down syndrome. And that's OK. I mean, when LB was born, it was a whole new world for myself and our family. I needed to know those stats and I wanted all that knew me to know them as well. These were the things that were important at the time. The little numbers that made so much of a difference in our new world because they caused me and us to stop and think. They gave us hope.

NOW, 3+ years into this roller coaster, I am certainly no expert, but just in a different place. NOW, I want people to accept LB and anyone with a difference for whom they are. Love them for the people they become and not their diagnosis. Love them for them. I want acceptance. No need to make others aware anymore. Because if you know me, you are HUGELY aware of LB and Ds.

I am in a different place all together as I also have a different version of acceptance now more than ever. I guess I never realized that it's a lifetime of acceptance when it comes to your children. Especially when there are challenges. Example, I find myself needing the constant reminder that LB needs encouragement, patience and motivation to do many of the things her sister does and that's OK. She needs constant praise and we have a long road of additional work ahead of us, where things come so naturally for her sister. It's a lifetime of teaching not only her, but those around us too; about her and about ways that she learns and what will work for her.  Just as I have to remind myself that Ash is NOT even 2 and I can't expect her to know all the things I am trying to discuss with her. Yea, it's odd that I have daily convos with my toddler - like we are lunch pals. HA!

I had a friend that spoke to a new mom whom was devastated about the news of her unborn child and a positive diagnosis of Ds. She wasn't able to grasp Down syndrome and all that comes with it. I chuckled on the phone to my friend because many of the things that used to scare me to  death, have actually become our reality. I worried so much about LB needing braces for her ankles; now I get excited to pick them out. I worried so much about her having sleep apnea, cross that one off too. I worried she wouldn't be potty trained by 2; that she wouldn't walk until 6; that she wouldn't talk; that her speech would be poor when she did start saying words, I worried and I worried. Ya know what... every one of these worries are now our lives and they make LB who she is. We just go with it. LB has overcome so many challenges, I can't put into words how proud of her I am. And she will have many more. We just gotta go with it.

It isn't her I want to change though. It's the world. I want them to understand her and most importantly, to give her a chance. I want it to be without question that a person with Ds can do and feel and say just like everyone else. That she can have a future either financially, acedemically or socially. I want her to have the world as her oyster and without question from others or the need for her to validate her existance.

I want her to be able to go up to a group of girls and be able to feel comfortable while playing. I want her to be able to get a job and live on her own with the money she makes. I want her to be able to have that money - to spend as she wishes and not have to watch the government funds all the time in fear of losing her health benefits. (trust me... I could go on and on regarding this topic).

So, while my daily, monthly or even weekly posts were a total FLOP, my desire to keep on advocating isn't. I will continue to be her voice. Until my last breath.

Until next time...


  1. I helped organize our Step UP Walk and I feel the same way! My 31 for 21 crashed and burned. I enjoyed hearing your thoughts about being in a different place with DS - thanks for sharing!


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