Sometimes, I feel that I have come along way in this journey of having a child with special needs. And then something comes along (like some very horrible facebook groups) that sends me into a tailspin with fear and worry for the future. The level of hate in the world, especially towards my daughter who has done nothing wrong, makes me physically sick.
At those moments, I find myself building a huge wall around my family--a wall so thick and wide and high that no one inside could possibly get hurt. I become so afraid of the mean people in the world, that a life full of isolation and mistrust seems like a better way to live.
And so we exist, sucked inside my fortress, until I lower the drawbridge a smidge, crack the door open a little and head out...and if I'm feeling REALLY brave, I even let others in.
Today was one of the "crack the door open"-type days.
While it may not seem like a big deal to most of you, the ending of the use of the r-word is a huge deal to me. And so I have been talking about it on facebook, posting about it here--hoping that SOMEone, SOMEwhere would see and that maybe, just maybe, they would make a change in their speech, a change in their attitude towards people with special needs.
I didn't know what to expect today, so honestly, I expected nothing. Then my mistrust of people would be confirmed; I could head back into my fortress with justification for becoming a family of recluses.
And then, I am surprised.
Because people love and support my daughter, my family. People will take up the cause--they will "spread the word", they will show respect, they will help make my daughter's life wonderful.
I don't know why this loving aspect of human nature always catches me off guard, always overwhelms me to the point of tears--but it does. Every.Single.Time.
And each time people show support for my daughter, I am encouraged to get out of my fortress a little more often. To take a chance on people and let them in to see just how amazing my daughter is. To let them experience the light and love that she radiates; how you can't help but feel happy when you are around her.
And so I am still learning to break down the walls--MY walls of protectiveness. MY walls that keep Miss B from being a full member of society simply because I'm too scared to let her be out there.
I need to learn how to let her light out and others' love in.
Because life isn't meant to be lived behind thick walls. And really, I shouldn't be surprised.
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7 comments:
That was wonderful :) Almost made me cry!
Miss B is amazing - I dont see how anyone could meet her and not fall in love.
Just so you know since learning about Miss B I no longer say the "r" word and if Kurt says it I remind him it's not ok! I think you're amazing and have every right to put a stop to it!
Carrie, this is a beautiful post. Thank you so much for sharing.....and you are, NOT ALONE! I still have those days also and my wall is pretty tall too! Vulnerability can be very difficult at times. Miss B is absolutely beautiful and she HAS a place in this world. She will touch the hearts of everyone she meets. She has already touched mine:) Share her with those who will never walk in our shoes for they have no idea what THEY will be missing!
I know what you mean about wanting to build a wall around your family and then sometimes being pleasantly surprised by humanity. I also had friends repost the "Spread the word to end the word" post. Sometimes I feel like I'm fighting a losing battle when I read some of the comments and posts out there in cyberspace. But we can change hearts one at a time.
I have also stopped using the "r" word since reading your blog. I never realized how hurtful it is, but once I took a moment to think about it, I realized it was not a work I wanted in my vocabulary.
It's great that you can let down you walls for her sake and others. I've been truly blessed by getting to know a couple of people with Down's syndrome. They have the spirit with them and they radiate it.
I know I am new on this journey, But I totally understand your post. Miss B is precious!!!
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