Monday, August 19, 2013

Is She Ugly?



*The events in this post happened sometime last summer.  


"Is she ugly?"

"No,"  My husband snapped back, "She's beautiful.  Now get out of here.  You're being rude."

I wasn't at the pool that day the 5 year old boy asked that question.  Apparently he had been back and forth about 10 times just completely enamored with Lamp and unable to wrap his mind around this unique baby who sat before him.   A few minutes later he brought his 9 year old sister over...

"Wow.  That's kinda freaky..." She said.

"No she's not freaky.  You're being rude.  Go away."

When B came home and told me all about the pool that day and these 2 kids we were split as to who was more rude, the 5 year old or the 9 year old.  I felt that a 9 year old should know much , much better than a 5 year old.  However, I think the 5 year olds question stung a little harder to B, so he felt that he was more rude.

Either way, we both wanted to yell at those ignorant kids, yell at their ignorant parents who raised such ignorant kids and then yell at every ignorant person, young or old, who might ever come into our daughters life and say something harmful and hurtful.

The only thing I was grateful for that day was that Lamp was still unable to understand his question...at least in context.  But that line gets thinner and thinner each day and there will be a day, and soon, when she understands what is being said and that it's being said about her and from that day forward there will be no turning back.  And it makes me want to scream and rip my hair out and throw rocks at windows and leave bite marks in someone's flesh.

It is a constant catch-22.  There is no solution.  It sometimes feels like we're living in impossible.  In the one sense, he's an innocent kid who is confused and intrigued.  But a kid who saying hurtful things nonetheless.  This is new for him, this is old for us.  He wants answers, we want to be left alone.  He deals with it once, we deal with it ALL THE TIME.  These situations are random and different and happen in different ways at different times.  And we're different from day to day--we're not perfect, so while we try to have a positive attitude sometimes we're in a bad mood or just caught off guard or just pissed that we have to be dealing with this at all.  It changes and morphs from day to day and the best you can do is try to keep up, hold your head high and educate.  BUT...

BUT...

It hurts.  Dammit.  And it makes me sad and angry.  And it makes me want to swear.  This is my baby you're talking about.  She is perfect and precious.  Andyou'reastupidkidandyourdadisfat.

My daughter is different and will always be different.  It is a fact.  People will always be curious.  People will always stare. And children will always ask questions.  And yet she is perfect, innocent and undeserving of such difficult circumstances.

There is only one way I can ever start to see my way out of this conundrum, this labrynth.

It is a word I remind myself of often.  All the time.  Over and over.

That word is grace.



I'm going to write a few posts on the idea of grace--what it has come to mean to me and what I've learned about this idea... and, many things I still don't have a clue about as well.     

**art

38 comments:

  1. Amanda2:09 PM

    I don't know you and I don't know Lamp. I've followed your blog for awhile and your instagram. I can tell you that you and your family have educated me and touched my heart. I will never look as a disabled person as anything but a person again, because of you and people like you in similar situations.

    That being said, my heart breaks for Lamp and for you all, that you have faced and will face stupidity, assumptions, judgement and cruelty. Lamp is precious, she is fearfully and wonderfully made, she is an overcomer.

    But wow, that you can respond to these situations and problems with grace...that is in itself a huge blessing, for you and your family. You guys amaze me!

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    1. Amanda--So glad the blog has been educational and helpful--that's always been my hope.

      And yeah, it can be hard to deal with. Just knowing it's a real part of her future is difficult. But I also think that everyone has really hard things to deal with and hers are no better or worse than anyone else's 'hard.' Although somedays it doesn't feel that way. I will say that choosing grace is not something that comes naturally for me, but I believe so strongly that it's the right thing to do, so I try, try and try again. :)

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  2. I could feel the "mama bear" in me coming out as I read this post!! Swear words!!! I feel the same reactions well up inside me when I face insensitivity towards my daughter.

    You're right...grace is the only antidote, and I'm afraid I don't do it very well yet...

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    1. Jojo--I know...like I said above, it's not a natural reaction for me. However, because this is something I've focused on since before she was born it's been more natural in my mothering of Lamp than in many other areas of my life... so hopefully that means I'm learning. But still....it's just hard.

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  3. Ugh. The pool is sometimes the bane of my existence (and I don't even have kids)! It's just somehow...acceptable to put your kid in one of those styrofoam...swimmy...floaty vest thingies...and let them "swim" away while we all play on our iphones and work on our tans.

    I'm hurting with you all even though I don't know you.

    I wanted to tell you that I was in a coffee shop the other day and a boy with special needs came in with his mom, and I just got such a kick out of watching him trying to smell the pastries through the glass, and I thought of you guys and your blog and how much it has touched my heart. He was just a really sweet, funny kid...and you have helped me see that.

    Embarrassingly enough, I' m sure there was once a time when I would have either ignored him or just sort of...rolled my eyes?

    But your girls and your blog has changed me for the better. Take Courage! We're all rooting for you!

    #iwillcomespankallthosepoolkids

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  4. OMGosh........I blame the parents. I am so sorry you had to feel that pain, makes you want to lock yourself and your family up in your house and never see another awful person again. Of course that would be a sad life. Our Madilynn has started getting the stares and points as well, most of the time I over love on her so those people know she is MY everything and she is a person too. We can only educate the world one ignorant person at a time!! Your family is beautiful and I feel sorry for those around you that can't get over the differences! Their loss!!!! Thanks for your blog, and thanks for sharing!

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  5. ps I would have marched them over to their parents and had them repeat what that said to lamp. there's gotta be a lesson in there somewhere they can learn!!

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    1. Kerri-- I understand the feeling. And yes I think there will be times the parents need to be involved. I think B was close to going to talk to them, but in the end just didn't want to deal with it.

      However, I'm not sure I 'blame' the parents. Like Kiki says below, children aren't always a reflection of their upbringing. I do think these kids were on the older end of kids-who-say-insensitve-rude-things, so perhaps it was their upbringing. But really, we get a lot of different reactions from the 2-6 year age range and many of them are difficult to navigate. Even if they're not outright saying something rude, it's the staring and sometimes grabbing of Lamp's arms. One reason I do work so hard on this blog is for the education and awareness I hope it brings to others. :)

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  6. How about a small business like card you could hand out to others when asked about Lamp? I think what you wrote above would be perfect on it.
    "My daughter is different and will always be different. It is a fact. People will always be curious. People will always stare. And children will always ask questions. And yet she is perfect, innocent and undeserving of such difficult circumstances."
    Ask the children to give the card to their parents. There is a great lesson to learn for others who don't know better.

    I remember walking in on a conversation my son was having with another boy. He was 7 or 8 at the time. The boy was shorter than my son and my son was pointing it out to the boy. I was surprised because I had never heard my son go on like that before. He got a long talking to about how we all are different in some way.

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  7. Yes, GRACE is the key here. And I think you can do it! If not for yourself, then for your kids. Because they will learn how to be graceful by watching you...

    Chin up, mama!

    The fact that you are even able to pull apart and examine these experiences means that you are doing better, by FAR, than so many people (including the parents of those kids, for starters)

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  8. Anonymous7:13 PM

    Is she beautiful? Yes!

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  9. Grace is sometimes such a hard state to find.

    I am sad reading this story.

    Thank God Lamp was born to your family.

    I really really like your blog. It's taught me so much. x

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    1. FF--true. Grace can be a hard state to find...having grace doesn't mean allowing people to be cruel, and sometimes the answer is less soft than other times (like my husband telling the kids to go away and that they're being rude). But often times grace does call for softness...which can be hard when the natural inclination is to fight fire with fire.

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  10. I want to offer another point of view. My son (who looks "normal") struggles with being socially appropriate. He is 13 and I have been teaching him proper social behavior his whole life. Not just through my words, but my actions. I live the way I try to teach him how to live, being kind to others no matter what. He has asked these kind of rude questions of others and it always hurts my heart. I see it as a failure on my part which it is not. He has a brain that functions differently. And I need to love him and continue to teach him. It is exhausting! Why are we so quick to blame the parents or praise the parents when children behave a certain way? We ALL need grace!

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    1. Kiki,

      I'm so glad you spoke up. Yes, we all need grace.

      I wasn't trying to paint these kids as bad kids or the parents--I was describing some of those feelings you have in the moment. In the moment it just sucks and I want to call everyone ignorant and yell and scream. In my opinion the 9 year old should have known better, BUT like you said we don't know what's going on with her.

      The main idea I was trying to get across (and will talk about more) is that with young children these interactions happen, usually more mild, but sometimes not. We've had some tough ones. That being said, they are children--most of them younger than 5 and most really don't know better. But it's still hard. And that's where it feels impossible. You either dislike and avoid young children or become bitter and angry....OR find a way to cope.

      Anyway, I'm glad you spoke up...I bet a lot of parents would be surprised at what their kids might do and say when faced with someone as different as Lamp. :)

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  11. Yes, we all need grace! That is one of the truest statements I've read. I look forward to learning more about that important concept in the coming posts. Your family is wonderful and have taught me so much.

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  12. People used to ask me, "what's wrong with your baby?" Grown people! It's a cruel world.

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    1. Lisa--yes, it's a lot harder coming from adults.

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  13. I have learned so much from your family over the past few years that I have been reading your blog and following you on IG. Thank you for opening my eyes. Even as a grown woman I can always learn and open my eyes to the beauty of every person on our earth. Thank you again for helping me be a better person.

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  14. Anonymous10:08 AM

    I really hope you and Lamp will not come across these situations ever again...
    One thing I learned from your blog is how is the world of special needs kids..I never had the courage or the courtesy how to react when I see a special kid...but now I know that it matters to them when I say hi and give a smile instead of ignoring them ..so I will make sure my 1 1/2 year old knows for sure how special every kid is and never put any kid in this position..I will also make sure all my friends and their kids read this blog and make sure they never ever say any hurtful words

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    1. Anon--I'm so glad my blog has helped in some small way. That always brings a smile to my face because that's really what I hope to accomplish in writing and sharing our lives. And while I too wish we would never come across these situations again, the truth is we have and we will. It is probably going to be a big part of Lamp's life--learning to handle these situations--and while that responsibility will fall much more on her shoulders than on ours, right now it is our responsibility to try and model the best ways possible. Having said that, as you can see from my husband above sometimes (especially after repeated inquiries and not leaving Lamp alone) you have to be blunt and tell them to go away. :)

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  15. I wish I knew you in person so that I could give you a hug. I'm so sorry that happened, I'm sorry that it will keep happening. I hope I can teach my little girl to be open and curious, but kind as well. Sending love from a stranger.

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    1. Laura--I'd take a hug!

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  16. Anonymous12:51 PM

    It's sad that you and my family have to deal with this kind of thoughtlessness and rudeness. My daughter had something similar happen on the playground while waiting for her other children. Her son has Down syndrome and has had open heart surgery and leukemia. He's healthy now but is very small for his age and has an unusual gait. She overheard a little girl say, "He's wierd." She spoke to the little girl and the teacher and tried to explain that although he is different he still tries very hard and it just takes him a little longer to do things. Then she contacted the principal and got permission to do a presentation and informative program for every class in the school. She geared it to be age appropriate for each grade level and the teachers and students seemed to appreciate the information. She explained about his particular syndrome that he was born with and how it's ok to ask questions instead of staring and saying mean things. She had lots of parents and teachers give her so much positive feedback. I know how it hurts when people say and do mean things but you are so right when you say that you will try to deal with it with grace. We get more results by being nice and patient (although it's so very difficult at times) than we do by losing our temper. Our family's mantra is, "one day at a time, one person at a time."

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    1. Anon--what a great story. I think that's a wonderful way to handle that situation and I applaud your daughter. We too are facing school and how to handle this situation and will probably have similar presentations in the years to come. I'm so glad she was able to do it for the whole school--it's valuable information for anyone at any age.

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  17. Anonymous1:01 PM

    I know a little girl with a limb difference and her mom puts together a book every year to share with her class to let everyone know she was born just right! www.bornjustright.com

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    1. Yes I know Jen and Jordan! She's such a great example to us other limb different moms who are a little further behind on our journey.

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  18. You know the hardest part is getting people NOT to talk about your child in front of them. I don't mind your questions, but I do mind that people ask in front of my son as if he cannot hear them or understand. I do a lot of "forgive them son, people are just curious." after we walk on. Hugs..she is a cutie pie, that sweet face and curls are what draw me to look...

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  19. I appreciate your blog so much, you are making the world a better place. Lamp is beautiful. She is amazing. And there will be a depth in her that many of us will never have the privilege of experiencing.
    I have three daughters, and I so appreciate your special needs spotlight (for many reasons) but I love the question, 'How would you like others to approach or treat your child?' I must admit that before your beautiful blog I was one who averted my eyes and told my children not to stare. I thought that was the polite thing to do.
    You've given me permission to smile, to say hello, or teach my children how to ask questions in a loving, respectful way when we see another human being, regardless of their appearance.
    Thank you for that.

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    1. Chelsy--Thank you. I love knowing that question specifically has helped so many people know what to do or say. Really, I'm smiling from ear to ear right now.

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  20. It's so hard some days, isn't it. I'm sorry. Hang in there. You're doing great!

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  21. Miggy, my heart aches for your precious little family and the difficult situations you encounter on a regular basis. I am very interested in your posts about grace, I think it is a trait that I need more of in my life.

    This is totally off topic but I was wondering if you painted the paintings on this post and on the next post? They are gorgeous!

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    1. Marci--No I didn't paint these paintings... I wish. I think they're lovely.

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  22. May I offer a contrarian perspective?

    "Freaky" and "Weird" are just other ways of saying "Different". IMO, the REAL rudeness was in treating Lamp as a phenomenon to be commented upon, rather than a sentient human being.

    To quote Terry Pratchett, "All evil starts with treating people as things."

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  23. Oh man, I hate this post. life is hard and I hate it. I'm sorry. We love you ALL!! Graceful thoughts your way! P.S. my ears are tuned to Grace through your posts as my kindergartener this year is asking about her middle name:) Thanks for the enlightening thoughts about it!

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  24. Hello
    You are a wonderful writer - thank you. I was recommended your blog by my friend Faux Fuchsia. I write a lot about what it's like to live with a visible difference and chronic illness - a skin condition called Ichthyosis. It's rare, severe and painful. This post resonates with me a lot. Children can be honest, cute and exploratory, but also cruel. I wrote a little about talking to kids about visible differences on my blog as I had some awful experiences where parents just diet explain difference to their children and I was left feeling awkward.
    Your daughter is so lovely. She's a bright star :)
    One day I hope you might write a guest post on my blog - would love to have you.
    Love to you all x

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