you need to stop living in fear…I was told this the other day…I get the meaning of this comment and I get that the person cares about us and wants the best…but I think that statement is easily said when you have not lived in others shoes…and a person that does not and cannot give up to a superior entity…I walk in these uggs when it is rainy, snowy, sunny and peaceful…so last night strolling through walmart I stopped…there he was…Mickie…I know this because I texted a friend that works with him…there he was shopping with an assistant…with his calculator…and they were discussing how much milk Mickie should buy…Vins the assistant he was patient, kind and not waivered at all at the many people staring at him and Mickie…I was starring because that is what I do…I stock people with Down Syndrome…I do… I follow them…but I still cannot speak to them…anyway…Mickie wanted 2 gallons of milk…and Vins commented that he did not use all his milk last time and maybe he should buy a gallon and ½ instead…Mickie was not wavering on this topic and soon just decided to move on…what I observed from this encounter…Mickie is normal…he wants it his way…and who does not…Mickie was frustrated that Vins was trying to talk him out of something…and who does not get frustrated when you have written down one thing and someone is trying to talk you out of it…and the other thing…Mickie had a great smile…as for the gawkers…not encouraged by this…it pissed me off…why do people have to stare, lean over and comment to the person they are with…Mickie has a job and so did Vins…and they were taking care of business…I was staring because I have to…I have a little girl at home that needs me to be ok with others helping her…with someday letting her go to live on her own if she wishes…then I think will she live on her own…or will she want us to help her or will she want Max…or will I teach her these life skills before she is 20+ years old…I cried last night…again in walmart…I cry a lot in walmart…but no one seems to notice me when this happens…they only stare if you have Down Syndrome…I am just saying…lots of emotions stir up when I have an encounter with someone with Down Syndrome…mostly because I want to talk with them…I want to say hi and thank you and for some strange reason I want them to give me a hug and say it is ok…and I know that is not there job to console me…they are usually younger then me for goodness sake…but still I want the reassurance…from them…I know weird…I do live in fear…I am in fear my baby girl will get sick and/or die…I am fear she will not be loved by others…and I am in fear she will be sad when people stare….I am in fear she will be hurt by ignorance…and I am in fear that Chad, Max and I will die and no one will be here to protect her…so fear is always lurking…so last night I kissed my Maddie with tongue and she giggled…and reflecting back a typical experience at walmart…
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I love your honesty. I love that you cry in Wal-Mart. I cry at Olive Garden. I think every mother has fears. I think when you look at the long term for our kiddos, it makes the fear even stronger. I always say to my husband, "But what will happen when Kaetlyn is 50?!" And he replies, "She'll be 50 and it will all work out." Sometimes I wish I had that calm. I totally understand your fears. I don't want people to hurt my baby or make her feel "less than"...but the cultural stigma is out there and we have to address it one person at a time. Thanks for your heartfelt posts. They always make me feel less alone! :) BIG HUGE Smiles to you! And if I ever see you in a Wal-Mart crying, I'll give you a big hug!
ReplyDeleteWe have the opposite thing -people who have a family member with DS have been stopping us when we are out with Owen. They always want to know how EI is going and to reassure us that Owen will a great life (and I know he will). It is like being part of a very special extended family, so rare in this age.
ReplyDeleteI hate crying in walmart, but I hate comments like 'you need to stop living in fear' even more. Really, unless you've been there I don't even want to hear stuff like that from people. Some days I'm ok with people helping Claire, and some days I'm not. I'm just glad I don't have to deal with that reality for a while.
ReplyDeleteI cry too, can't help it. And you are right, people have no right to judge unless they've walked the same walk. I know even if they are trying to be helpful, sometimes it's not.
ReplyDeleteI dont like those type of comments either, no matter how well meaning they are. People who have not walked in our shoes say something like that because it is not their life, it is not a big deal to THEM! When people tell me things like that it hurts because they are making light of my fears which are very real to me! We have a right to be scared about our childs future, simple as that.
ReplyDeleteI still cry too sometimes Kim, you are definatly not alone there!
Oh how I can relate to the fears! And I cry too when I think about what the future holds for my sweet son.
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