Is she a level 1?

We had a yard sale this summer and one of our customers asked me if LB was a Downs level 1. I knew what she was talking about but I played the confused card and asked her what she meant by that.

I wasn't trying to be a PITA, I just wanted to understand her thought process. So she explained to me that she had a niece that was (in her words) Downs. I shuttered a bit. And then she explained that she was in her 20's and her sister was told by the Dr. when she was born that she was a level 1. The classification was based on her perceived ability of functions in the future. When she was born. I'll leave you with that.

When I told this lady that her doctor had misinformed her sister, that there is no level classification. You either have the 3rd copy of Chromosome 21 or you do not. She seemed a little shocked that I would say something like that but then went on with the explanation of her niece. She loves boys - she said. She's boy crazy.

I said that was lovely and went on about my day.

It was a strange encounter for me. I wasn't sure I could pinpoint what actually bothered me the most. I don't like to hear assumptions about girls with Ds, aka, they are boy crazy or flirts. I mean aren't allll girls to some degree? That gives me anxiety. I also have a STRONG hope that LB will not live up to any of them. So far, we are striking out. But I don't want her to be boy crazy. Mostly because I don't want her heart to be broken as I don't want the other 2 to have a broken heart either. But mostly for safety reasons I am scared for her to be boy crazy. I don't want her to be taken advantage of and not be able to ask for help or tell me that someone has hurt her. I am sure to talk more about this topic over the next month so I won't dive into it too much here. Or was it the fact that this poor mother received so much misinformation? How can you tell the function of a person AT BIRTH? Or the non-chalantness of me telling her the proper terms and correct information as it pertains to a child that she's clearly known much longer than I have been a mother? The options of disappointment were endless during this convo.

I have to say, I am getting better. I am no longer so quick to correct people when they say Downs or Downs babies. Admitedly, I cringe on the inside the entire time. But I no longer get so annoyed that I don't try to hear them out. Ultimately, I believe that many - not all - but most of the people are trying to learn something or share a commonality about Down syndrome and or LB. She draws people in, that's for sure. I also want to believe that the world is full of mostly good. Sprinkled with a few rotten ones of course. It's my bubble so I shall live here as long as possible.

Given this first day Down Syndrome Awareness Month, 4 years into this wonderful ride, I find myself with a much thicker skin. I am certainly more tolerant, accepting and understanding but I will also take every chance I am given to educate and advocate for acceptance should the opportunity present itself. Which is the very reason I sit here writing this.

I trailed off from blogging for such a long time because I wasn't sure if I had a voice to share anymore. I wasn't really sure if I had a place. Funny enough, I had a hard time not comparing myself and my writing to more established bloggers with much younger children. But that's the number one rule in being a Mom/parent. NEVER COMPARE. It's the Golden Rule, right? I really felt like a giant hypocrite - here I am asking others to treat my daughter the same, and I wasn't allowing myself the same justice.

Well, I have dusted off my sadle and my wounds seem to be mended. Back on the high horse I will go to sing my song, advocate and share MY voice for MY daughter.

By the way... there are no levels. No labels to say if she will or won't do anything or what to expect for her future. But from what I remember, I never got one of those handy manuals with the other 2 either. If you did, please invite me to your secret club. I beg of you.

Here's a slice of our life... one day at a time. I hope you will join me for another year of 31 for 21 as I blog every day for the month of October. To spread awareness of the need for acceptance; to change perceptions of what it means to have Down syndrome and to make everyone see that all lives matter.

Oh yeah, and some cute pics of this gal.

Until next time...


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