Thursday, September 12, 2013

making disability facebook officlal

For a few months, I have been helping and watching my best friend of 20 years, Kristen, go through a huge life change. For one thing, my platonic life partner and her lovely husband are expecting a baby, which is huge and life altering since I can still remember playing Barbies with her, I find this whole thing pretty damned surreal. On the day they anticipated finding out whether they'd be having a him or a her, they got some news they didn't anticipate...at all. After extensive testing, they learned their sweet little girl, Claire, was going to be born with Down Syndrome and an operable heart defect.

Having been at her home when she and her hubby got the confirmation from the amnio, I can affirm that it was one of those moments when the earth kind of stopped moving for a few seconds. The air was completely sucked out and there were no words that could change anything. [Tangent: As I know, genetics aren't something that you cure with prayer or good tidings, they simply are what they are and all you can do is make the choice of how you deal with them.] Everything that they expected was now totally different and suddenly their life got a whole new set of challenges.

care of Safety Third's etsy shop
Because my friends are awesome, of course they see Claire are the superhero she is going to be [Tangent: I almost feel like she is going to be like one of the X-Men. I mean all of them had mutated designer genetics and look how they turned out. ] and despite being scared semi-shitless, they are completely up for the challenge. Within days  of finding out, she was connecting to other mothers of children with Down Syndrome and starting to make a game plan out. [Tangent: For years, Kristen has been one of my biggest advocates. I let A LOT of bullshit slide, because I just don't feel like fighting for it- yet she has never shied away from busting heads for me. We have always been very upset about parents that clearly do not deserve disabled kids. The ones that use them as a means of getting a check in the mail or who treat them as a ticket to getting pity and pad themselves as a sympathetic person.]  Between she and her husband, that little girl is getting born into an optimum environment and for that I am extremely thankful. She and Josh get to be some of the good ones.
from cafepress
For months, seriously, I have been itching to write about this because it is something that deserves being spoken about...but it was not officially public knowledge...rather... It wasn't Facebook official. It seems like such a weird thing that in 2013, that's a step that is necessary in life...but it is. Kristen and I talked about it a lot. Although most people she interacted with regularly knew all about baby Claire, several people didn't. People talk and made assumptions and she didn't want her arrival into the world peppered with speculation and talk. "Does her baby look a little Downsy to you?" or "Do you think she knew before hand?" [Tangent: I can only liken it to a celebrity feeling like they have to release a public statement before news breaks. It was best to do it on her terms.]

Only the things that were the most scary were people's responses. [Tangent: Either as someone with a disability or as someone who loves someone with a disability will confirm,  people say awkward things when they don't know what to say. Whether they overly sugarcoat or are overly dour- these things will happen, so you pretty much have to go into these things with no expectations.] . Luckily, so far no one has completely stuck their foot in their mouth to the point of no return. Everyone in the facebook thread is super supportive and encouraging of my friends as they should be. 
 
from the National Down Syndrome Coalition

Although I find it bizarre that everything has to be made public now in social media in order to make things official. [Tangent: I know, as a blogger and person that lives on social media...that's a bold statement to make.]. I also find it incredibly refreshing. When I was born, I was a genetic surprise and there was no information superhighway to connect people to offer support and clear the air on things. It would have been much easier if my mom or dad had a profile in the early 80s where just once they could say, "Yes. My daughter has a disability and we are totally cool with it." instead of breaking the news one by one to people in their lives or having to constantly be met with surprised looks.  

It's a strange world we live in now  and I can't wait to welcome my sweet new "niece", Claire, into it. She's gonna be awesome. [Tangent: Please control me from buying every onesie in this post!]


from cafepress

9 comments:

  1. So glad y'all have "come out." So excited for Claire to get here!!!

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  2. Nice read. I was not aware of any issues with the pregnancy. I know all 3 will be beyond fine. Tough, good people for sure.

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  3. I'm happy for Claire that she chose such awesome parents to be born to. The world is becoming an easier place for the disabled - far, far from perfect, but certainly easier than it was when I was born. I don't know your friend Kristen but I want to extend my best wishes to her and Josh! :-)

    Alicia

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    1. Absolutely! There's no telling how things will be in the coming years

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  4. Awww, sounds like Claire's going to a fantastic home. Good parents, good auntie, life is looking pretty sweet! People need to stop acting like being born with a disability is some sort of tragedy. Every baby is a blessing. :)

    I recommend choosing one of the above onesies, cuz a girl's gotta have her disability pride, and then dedicating the rest of the baby shopping to other important life themes. I'm sure there's some great Full House referencing baby apparel out there. :)

    And, finally, my favorite Down syndrome link of the day: http://www.huffingtonpost.com/2013/09/12/will-kate-painting-gift_n_3915196.html?ir=Impact&utm_hp_ref=fb&src=sp&comm_ref=false#sb=4829302b=facebook

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  5. Oh yes she'll be getting loads of baby stuff!!!

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  6. Kimmie, you have an amazing ability to capture life's moments. No matter how awesome or heartbreaking, you shed light with your loquacity, intelligent storytelling, and witty tangents. I always enjoy your blog posts but this one is especially special. Kristen, Josh, and Claire Bear are so lucky to have you as family and an advocate. I am blessed to call you my friend!

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    Replies
    1. Aww you're so sweet, love. Thank you. I can't wait to meet her!!!

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