Thursday, July 12, 2012

In the Hot Seat




I was working on a trip recap post but something happened today and now you get this instead. 
Lucky you.


To set the stage for where I was mentally, I read a post last night about a guy who was born with one hand and what it's been like for him to cope with the staring and attention his limb difference has brought him over the years.  It's not a whiney post.  It's actually hilarious on spot-on at the same time--which seems to be the general tone of his blog.  Read the post here.  But what stuck with me most about this post was the fact that even after 33 years, Ryan--who is married with children--still finds it difficult sometimes when people, even children, stare at his missing hand.

So that's what I read last night.

This morning a friend invited me and my girls to a free kids movie with several other moms from her ward.  Ward = Mormon congregation....we're all on the same page right?  This is an acquaintance/growing friend I know from our NYC days who just moved here about a month ago with her family.  They happen to live in a ward with many thriving young families.  We don't.  Therefore, it would seem that in one month she has a amassed a healthy amount of friends while after a year I'm still trying to find my posse.  Did I mention it's been a hard move?  So my point being, I was excited to get out this morning and meet some new moms.

To recap:  life-long limb difference and staring = still sucky and I have no friends.  Capiche?

So we go to the movie.  Afterward everyone is going to Chick-fil-a for lunch.  And so we decide to go.    And so we eat and it was good and fine.  It turns out it was a pretty big group of people--even some dads met up for lunch, tons of kids and probably like 8 or 9 moms.  So it just wasn't the best atmosphere for "friendship building opportunities" if you know what I mean.  But it was still a fun outing and I was glad we went.

Naturally the girls wanted to go play in the play area.  It was small and mostly vertical, so I  pretty much stayed on the ground with Lamp while PSP went bounding up the play structure.  It wasn't long before kids starting taking notice of Lamp.  Which happens.  One little girl in particular (who had pink eye I'd like to point out for the record and while limb differences aren't contagious pinkeye is dammit!) came up and asked What happened to her arm?  I put on my best mom smile and told her She was just born that way.

Which is the absolutely worst explanation to the under-5-year-old mind.  In fact, as I'm typing this I'm realizing that I really need to come up with a fantastic story of alien abduction and lazar arm removal or a shark coming up our toilet and bitting it off because believe me when I tell you either of those scenarios is MUCH more believable to the average kid than telling them she was born this way.  They just can.not. wrap their brains around it.

So as per usual, little miss pink-eye kept staring.  And I kept smiling.  And as usual, she asked again.  But...what happened to her arm?  And I smiled and said, She was just born this way.   


To be clear I tried various born-this-way talks, like she didn't have an arm when she was born, and everyone's different just like you have brown hair and she has blonde hair, blah blah blah.

At some point, some other kids joined her.  Well that's not entirely accurate... all along from the second we walk in the play area kids stop and stare at different intervals.  Some up close, some far away, some for shorter amounts of time, some for longer.  That is just the norm.  And I get it.  I do.  They're kids.  They've never seen anyone like Lamp before.  I get it.  But, it wears.  Anyway, the little girl was the first one to be vocal, but there was an ebb and flow to the children coming to check her out.  And usually it's just an ebb and flow.

But sometimes, like today, we were suddenly surrounded.  And kids asking questions and staring and pointing.  I heard one boy say something about her robot arm.  I kindly said, It's not a robot arm.  And Lamp echoed, not a robot arm.  And yes it was cute, but I sorta wanted to karate chop the moms who sat in the back and chuckled because they thought that was adorable but did nothing to come and talk with their kids and help bridge the understanding gap that I was clearly struggling with.  I talked to them about her prosthetic.  And then I noticed it slipping off--like it do--and found myself having to take her arm off in front of a room of curious children like she was some sort of science fair project.  I hated it.  

At some point, I had to stop, take a breath and gather myself.  It was really an overwhelming moment.  And with the perspective of someone with just one limb difference echoing in my ears from the previous night, I couldn't help by think, this is the rest of her life.  And as she sat there so innocent, beautiful and still mostly oblivious to what all the commotion was about I also tried not to think about the fact that her awareness of why children and adults gawk and stare at her is slowly starting to erode little by little.

And for some weird reason the fact that I wasn't there by myself made it just a little harder.  Not by myself, but not amongst friends either.  I don't know how to explain why this made it more difficult--not even to myself.  I guess when we're on our own I can handle myself without fear of judgement from strangers or something.  But being there with people I kinda know or am trying to get to know but having no actual support just makes it harder.  Or the fact that I just want to blend in and make friends and I want my daughter just to be able to play on the play-thingy without having to hold a debriefing session for the gathering preschoolers.  

******

A couple months ago I was at a party and was introduced to a woman with an upper limb difference.  She was my age-ish and married with a kid.  She told me about dating and what being single was like for her.  Since she too had just one arm affected she told me how she always, no matter what, wore long sleeve shirts whenever she went out with her girlfriends.  Eventually she turned to internet dating and she would try to hide her right arm for as long as she could.  She said that while she did struggle with her own body image that wasn't the reason she hid it.

I said, I know why you did.  Because they would count you out.

Exactly, she said.  If a guy saw her arm before she even had a chance to talk to him they couldn't focus on anything else.  But if she could get through even one conversation, she had a chance...

******

At some point, I felt a renewed burst of strength amongst the curious band of kiddos.  I found some common ground and tried to build on that and eventually the storm passed.

In one sense Ryan's post about still getting his feelings hurt was hard to hear.  Part of me was really sad to realize that a man with "just" one missing hand still dealt with that.  How would it be for Lamp?  And like talking to that woman above one of my biggest fears is having people count Lamp out upon first glance.  On the other hand, Ryan's post was good to hear because while he acknowledges that children and their innocent curiosity are natural, it's also natural to still struggle with the pain that can come from being different.  I need to know that.  Lamp will need to know that.  Which leads me to my final thought...

From almost the beginning, back when I was still pregnant with Lamp, I have felt and continue to feel the importance of handling these situations with kindness and respect.  I want to give people, especially children, the benefit of the doubt and model positive response behavior for my girls.  I truly feel that this idea is part of the bigger picture and purpose.

But sometimes, I just want to punch little kids in the face and tell them to go away.
 

37 comments:

  1. Oh, man... just want to send you a big hug!

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  2. Okay, pink eye at the playground? Just no.

    That is so tricky, getting cornered by all those kids with all their moms watching, who you hardly know. Ugh, I feel anxiety just imagining it. I'm proud of you for handling it.

    PS I was working on your trip recap today, too! Just posted it. And I'm glad I got it in before you since I'm sure yours will be way awesomer.

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  3. I wish I could send a big hug, too, by the way. I can't imagine what you deal with on a daily basis, mama but you sure seem to do so beautifully and graciously. And it's totally okay to want to punch them in the face sometimes. :) Lamp is lucky to have such a great family.

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  4. I love how open and honestly you write. I know what you mean about not having a friend to back you up. It's really hard and lonely too. I hope Lamp continues to be oblivious for as long as possible. When she does start to notice, she can be the one to punch the kid in the face with her bionic arm!

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  5. Thanks for the love guys.

    Just to clarify, there were only 2 moms in the play area at the time and I'm not even sure if they were with our group. If so, I was never introduced to them. I didn't want to make it sound like everyone was right there watching and just sitting back. Regardless, there was still the feeling of "I came here hoping to meet new peeps, and now I'm just off in no man's land without a life jacket..." Anyway, just wanted to clarify.

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  6. I think that you have grace...grace upon grace. I hope that God continues to bless you and little Lamp with an extra dose of patience. Your writings and your heart for your girls is beautiful.

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  7. If you lived in SC, I'd totally be your for-real friend instead of a cyber-stalker, um, I mean friend. And not because you have cool kids, and not in spite of the fact that you have cool kids. But because you strike a balance between sweet, strong, loving amazing mom who shares her life with us with honesty and vulnerablity and down to earth everyday person who gets irritated and fed up and ticked off just like me. So while I strive to achieve the former qualities, I identify with the later.

    However, I have to ask... what would have made this situation better? As a parent to an almost 6 year old and a 16 month old, I want to teach my kids how to approach all people with respect and kindness. Through your Special Needs Spotlight, I noticed that one common thread most parents mentioned was to just ask directly rather than shush your kids. Now, I get the difference between asking and being mobbed, but if you could rewrite the event, what could the other parents have done to help you out?

    We talk about diversity and everyone being different and yet still alike, but in my small little town, we tend to see the same familiar group of people. I would like to know some of the 'right' things to say and do so my kids hopefully don't make some other family feel uncomfortable or bad.

    Hugs to you and your girls. Y'all are in my prayers daily.

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    1. Melissa,

      Thanks! And I'd definitely take you up on your real-life friendship offer. :)

      And I think your question is a great one...and I'm so glad you noticed the same thing in the SNS--that across the board the best thing is just to ask. Open a dialogue. I have to say in this situation I described today, I'm not sure what the best option would have been. I don't know that those other moms sitting there were even aware that we were feeling suddenly surrounded. Heck, I don't even know if it were their kids in the group. And maybe they thought I had it under control---which I guess I did. My only suggestion would be that if it was your kid over there asking questions that it might be really, really helpful to come and help them understand in the way only a mom knows her kids understand things. Especially if I seem significantly outnumbered. :) For example maybe Pink Eye girl would have been helped in her understanding if her mom or dad were there to say "Remember Grandpa Gill and how he has to be in a wheelchair....it's sorta like that..." Or something... in the end a parent will know best how to help their child understand and so being present in the conversation helps. Definitely, definitely DON'T shoo your child away...but be part of it. That's all.

      Thanks lady--good question.

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  8. Wow. I love your blog. I wanted to call a little 6 year old neighbor girl a b#tch one time because she wouldn't stop making comments about my baby who only has one arm. Who thinks like that? Apparently I do...don't mess with my kid! Love your honesty. Even if you get used to all the stares, they still suck. Simple as that.

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    1. Lisa--

      Exactly...when it comes down to it we're all just mama bear's about our cubs. Even the mama's of the cubs we want to punch in the face/call names. One big, happy human family. And yeah my main point wasn't that anyone--especially the kids--was doing anything wrong...but it's a sucky situation nonetheless.

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  9. I think you're doing a great job, and I know everything's going to work out just fine. Thanks for the picture of Lampy! :)

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  10. It's tough. There has to be an age appropriate explanation that shows them that lamp is just like them, but with a different arm. I wonder if you can pull a "finding nemo"? Talk to Jordan's mom at http://www.bornjustright.com/ I bet she has ideas!

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  11. I remember when an adult said to my son, What's wrong with you are you stupid or something." My older son picked him up and brought him home. The man apologized but I never thought much of him after that. He was supposedly very religious. Mental disabilities are harder to notice than physical. I just feel so bad that you had to and have to go through that. It stinks.

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  12. Anonymous1:25 PM

    I'm sorry. That sounds rough. I know that your ward is determined by geography, but is there any way you could attend a different church with more young families? Perhaps the church near UTSA or out 1604 and West a bit? If you get outside of 410, especially North, you get a really different group of people. There are some areas that are more like Austin or other hip college towns.

    Laura

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  13. It makes me so mad that the moms didn't talk to their children or support you in anyway.
    I recently became friends/growing acquaintances with someone whose 4 year old son is deaf. I told my son beforehand that it was going to be a great day because there was going to be another boy his age for him to play with. I explained that he couldn't hear very well and that he speaks using his hands most of the time. My son thought this was really cool. When we got there the little boy said hello, my son said hello back and then they ran around the playground like old buddies. I was ready to answer questions on the way home but there wasn't any, he just said he would like to play with him again and that was that,
    Parents need to step up and not be afraid of saying the wrong thing, if your child has questions, answer them. Teach them how to be excepting of others and how everyone has differences that set them apart.
    You seem to be doing an amazing job with lamp, she seems so outgoing and determined. She will be fine because you girls have the right attitude, explain her differences as they are and then concentrate on what is the same. And if you get a kid like pink eye who won't let up, I see no harm in saying with a smile 'honey I have already explained to you why, that's all there is to say, I'm not going to answer any more questions, lets play'.
    Lamp will be used to extra attention, pretty soon she will be able to talk for herself, I have the feeling she won't let it bring her down, she is a little ray of sunshine.

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  14. Anonymous3:21 PM

    Hang on, sister. I really believe you are doing your hardest time right now - and same with Lamp herself, sort-of-pre-verbal little 2 that she is (just like every other 2, I might add).

    My oldest is the child with special needs. I found things (ALL things: friends/ease of living in this world with his needs/etc) much improved after child #2 started school. Since PSP is older (and going to school this fall) my prediction is that your next year will be a great one. You will find good friends among those who have kids the same age, who do the same things - the little girls who take dance with PSP, play on her soccer team, are in her girl scout troop, etc (and I hope you all do a LOT of that stuff, because it will pave the way for Lamp to similarly participate with the other little sisters).

    My best friends are the ones who have matching kids to mine, who see our whole fam in all its glory (and occasional wretchedness). Most surprising to me is that one of my biggest allies, someone who is always backing me up and even seriously helping my oldest in ways I only hear about from someone else later, seemed like such a bad apple to me initially (when my oldest was in K). The constant round that is public school forces you to interact with these folks constantly. They get used to you and whatever funky special-needs stuff you've got going on. Though it is sad and should not be the case, my "typical" kids are bait for other families, who then find the courage or whatever you want to call it, to embrace the rest of us. It doesn't happen with every mom, but it has now happened to me SO many times that I expect it, and just accept it, and am grateful for these families that love us and make the effort.

    Wow, did not mean to write such a long note. I guess I remember those days (I once had oldest in a gymboree class - I have blocked most of that memory, but I do recall the day they had the giant african drum out, and oldest decided to bang with his head...every other little kid wanted to discuss the why's & how's of his behavior, and the teacher and other moms said NOT A WORD for I swear, 10 minutes, of me "explaining.") I never went to another kiddie music class with any of mine again. No regrets, but I am glad I am over those days... You all will figure it out. You are figuring it out. Hope my two cents helps and encourages you. Pink eye's mom pays in other ways, I am sure.

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  15. Anonymous3:43 PM

    So maybe the positive is that one sucky day will make other days easier. Next time when you meet up with the same group, the kids can get to know Lamp for Lamp. They've noticed the differences, discussed and stared - so next time that will be old news for them. They can just play with her as one of their own, and when outsider kids start to stare or whisper they can now just nonchalantly say for you, "Oh she was just born that way, her name is Lamp and she is super cute and repeats things her mom says". And since you covered the entire group in one sitting, you won't have to go through it 15 more times.
    And while you were trying to handle the situation with kindness and respect, I agree that the parents should have been close by to make sure their kids were doing the same.
    I think you should stick to your "everyone is born different" line, but maybe just add on, that since Lamp was born super special, you are pretty sure she is going to have super powers and you can't wait to find out what they will be!
    You do such a beautiful job with your daughters. They are lucky to have you as a mom.

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  16. Anonymous6:16 PM

    Don't forget that kids live to play. If you start getting that "trapped animal, wanna take a swipe" feeling (and haven't we all while our kid screams and people stare and judge) just remind the kids that Lamp wants to play now also. Give yourself a break. You are doing a great job navigating a life without a guidebook.

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  17. That last line is UNBELIEVABLE. I read this at work and nearly fell out of my chair I was laughing so hard.

    Thanks so much for your kind words about my blog, Miggy. "Hilarious and spot-on" is about the best thing anybody could say about what I try to do. I really appreciate it.

    This post was amazing. The part about kids and their inability to comprehend being born without a limb...100% accurate. Not sure if you saw my post about "having fun with it," but your shark in the toilet idea is genius.

    Also, I feel for you in your role as a mom of a limb-different kid. It's clear you love Lamp and your actions prove it. I really think it will get easier, too. Lamp will lead the way. :)

    Stay strong and love lots,
    Ryan

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  18. Those moments suck! It's like you are living your normal everyday life and moments like that are just a big slap in the face that your "normal" is different then the average normal.
    The other day a 5 yr old in front of us at church who was playing with my daughter over the pew kept commenting about what was wrong with my daughters hand. Her mom (a friend of mine) talked to her about it quietly in a way that she could understand and then she went back to happily playing with my daughter. The mom found me in a later meeting and asked me if how she handled it was okay and if I was comfortable with it. I wanted to burst into tears and tell her how much I wish everybody would handle it so easily and appropriately as she did.Instead I restrained myself and told her I appreciated it and we had a good discussion about how adults need to be an example for/educate their children on differences.

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  19. Oh my goodness. I so related to this post on so many levels, Miggy. In fact, we've had almost the exact same experience at chick fil a before - I think the closed off/separated play area (& therefore moms on the other side of the glass watching) makes it extra challenging for those of us with our kiddos who are different. Once, a kid followed my 2 year old Will (all 4 limbs affected) up into the tubes/tunnels and messed with him and Will came out bleeding and crying. The father of the other child just took his kid & left the building without ever apologizing. Awful.
    We too are new in town and have struggled finding best friends. I'm desperate to find them as it does make such a difference when these situations happen to have your friends nearby. Mine back in our previous city were so good - sometimes just crying or noticing that this is hard when I dealt with curious kids or occasionally dropping off chocolate after a particularly difficult experience. I will tell you that I am a big believer in a "core" group of friends for our kids - once they have a few good friends who know them well and who don't notice their limb differences because they know the kid and they play with them and know that they play just like they do, it makes such a difference. We are working hard to find a core group here for Will and it has been a struggle so far but I know it will make a difference.
    As I've started speaking to various moms' groups around TX about how to teach their children about other children with differences, I've loved hoping that maybe some of those moms will take some of our experiences and use them with their kiddos to teach respect and how to handle their natural curiosity appropriately. So many have shared stories with me about freezing up - and I don't blame them as who knows what I would do if I wasn't a mom of 2 kids with differences. I always say smile instead of stare and wave instead of point and it's okay to ask questions - but set boundaries for your child.
    I have definitely told kids before that I am done answering questions and instructed them to please allow my child to play now. It's hard knowing when to step in for your kiddo and intervene and when to allow him to do it for himself. (And one little girl didn't stop once so I told her a shark got him at the ocean just a few feet away. That put an end to it... and possibly to her enjoying the beach that week. oops.)
    You are in the prime time for "practicing." These kind of opportunities can be good for you to try out different lines on the kids or to figure out how many questions you will put up with before moving them on, etc.... Lamp is still young enough that you can practice for awhile before you really need to have your answers figured out better. And there is nothing wrong with crying behind sunglasses - many a time I've left a situation and turned up the music in the car and had a good cry the whole way home. I'm not sad about my child - I'm sad sometimes that the limb differences become the focus of other kids and they don't simply embrace him and recognize that he is a kid just like them.
    Thanks for sharing so honestly
    -Katie
    Ps- I LOVED your last line - it totally validated me! I can't tell you how many times I've asked my attorney husband what I can do to that rare cruel child we've encountered without putting myself in jail! Glad to know this fierce mother protective instinct is normal! :)

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    1. Katie--OK that's perfect--I needed to hear that, the part about stopping kids and telling them the conversation is done and now it's time to play. And yes--I was serious about coming up with a secondary story as well. The shark thing is perfect! I mean, after I've tried to explain it the first 5 times, it's a good way just to end it.

      That's cool about speaking at various mom's groups--I bet that really helps. Them and you! Well please let me know if you're ever in SA again.

      Hugs.

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  20. My bro-in-law has limb differences and has come up with some great comebacks to the "what happened" questions. My favorite is the booger monster ate his arm because he was picking his nose!

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  21. I don't know if this will work or not, but since you've observed that "born that way" means zilch to preschoolers, it may be worth a try. Just smile and say, "It's because her stomach is so small. Her arms and legs formed smaller because her stomach is small."

    Kids of that age are trying to figure out how the world works. They want to know the cause/affect connections of things-- or at least be assured that there IS one. They may not understand what Lamp's stomach has to do with her arms, but just the assurance that there is an answer may be enough to reassure them. Or at least say "Oh." and leave, which is the desired outcome anyway. ;-D

    Though hopefully, you won't be "cornered" like that again. :-P

    My niece is about Lamp's age, and she does the "echo" thing also. ;-D

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  22. i've made this comment before, but it seems appropriate again. i am a child development specialist in early intervention. i really love hearing your perspective as a parent and also other parents' perspectives in the SNS. this post is the kind of thing i don't always hear as a professional, but it makes me feel like i can relate to parents a little better. thanks so much for sharing your experiences.

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  23. Anonymous1:40 PM

    I have to say, you are amazing. Period.
    Kids will be mean, adults will be ignorant.
    My dad has a head injury (which is not the same as its unseen, and he is my dad) However i've come accross many people who feel the need to talk to my dad loudly, or like he is simple. It is very frusterating. I've watched my mom handle it for the past 14 years, and i just think she is amazing. Your attitude towards everything will affect your daughters attitude. My mom was so supportive, and never let anyone talk down to my dad, or try and take advatage of him.
    I think your explination is just fine (although i do like the one about boogie monsters....)
    Cerrie Burnell is a tv presenter for a kids show in the UK, CBeebees ( we used to live there, my daughter was addicted!) I found a clip where she talks about her disability (she was born with 1 arm) and how she approaches children when they ask her why she only has one arm, http://www.youtube.com/watch?v=mK61ssge600
    Also, i love the nicknames for your kids!

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    1. I am originally from the uk and I have seen the presenter you are talking about. I love how she always wears short sleeves, it such a wonderful message for children to see that we are all different and different doesn't need covering up.

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    2. Anon--Thanks for this video. I remember reading about that controversy when it first came out. It boiled my blood. So watching her talk about it and how she's really not that surprised because people with handicaps are discriminated against all the time... it's true. Hopefully more people with handicaps will continue to play a bigger part of our everyday culture and experience.

      Louise--couldn't agree more! differences don't need to be covered up.

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  24. Anonymous5:15 PM

    I am grateful that you share these stories, and I think it will help me to be a better mom in situations like this. When my daughter was 18 months old I quit working full time to stay home with her. We went to the park everyday and loved it, but one day there was a group of moms who had met there. They must have all lived close, because we had all walked there, but I didn't know any of them. I felt more alone that day than I did when really were alone.

    I have a cousin who has Cerebral Palsy who is just going into 10th grade. I know that through all of elementary his mom would go into his classroom at the beginning of the year and talk with the kids in his class. Knowing what explanations work for kids could definitely help future situations.

    Thanks! Kristin

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  25. Anonymous2:38 AM

    I've always felt a tad guilty about this, but I think I've finally found an understanding audience! I was with my cousin (single mother of four) when her youngest did his first "point-stare-loudly-exclaim 'Mommy! Look at that man! Why's he like that?!'
    I was much younger then but I'll never forget what my cousin told her son, in all seriousness: "That's what happens when you don't look both ways before you cross the street." (I recall he was an amputee in a wheelchair) I thought it was hilarious, and I vowed to tell my children the same thing in similar situations. 10 years later, the opportunity arose when my first daughter asked me why a man we saw had only 1 leg...I knew she was too young to get the reality of it, and I just couldn't resist. I thought that maybe it hadn't even nested in her little mind, anyway, since she didn't start a dialogue about it. A few months later, though, I heard her explaining to her little friend about a neighbors's 3-legged cat "it didn't look both ways; we should always look both ways!" Success!

    Now that she is older (5) I have taught her to approach people with differences and talk about their handicaps. She doesn't even ask me about people first anymore, she simply asks "mom, may I go talk to that lady?" without any prodding from me. And here I'll add that I ALWAYS accompany her ;-) but she has learned to ask questions appropriately...she is curious, understanding, feeling, and frank. I am so proud of this aspect of her and her personality, and I owe it all to YOUR blog. Your Lamp, your life, your perspectives, patience, fortitude. I've been reading your blog for years, I'm not even sure how I found it. I don't know you, but I sure wish I did.

    I have no words that have not probably been said already. Your journey and experiences are beyond my feeble vocabulary and reaching emotions. But anyone can see how strong you are. Through-and-through, whether you feel it or not. Your kids will feed from your strength, and your little Lamp will be more than fine, despite the expected hardships. People who have sailed uncharted waters have always been the ones to change the world; I believe big things will come from your little family.

    I for one, will still be reading as long as you will feel like sharing.

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  26. Anonymous2:21 AM

    A cute explanation we used for my niece (she has a few deformed toes....so minor, I know! But it could be applied to other conditions) was that they ran out of regular toes when she was in Heaven, but since she didn't want to wait any longer to come to earth, they gave her what they had and sent her on her way... I always thought that was sweet, and the littler kids seemed to accept it :) just another idea for all you great moms (and dads!) out there.

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  27. I had to hear a little boy tell his mom that my baby is "gross" and how he's glad he doesn't have a baby like that at his house because. . . (puking noises). and it was hard. it's hard to be the chirpily positive, "different not weird!" mama when you really just want to scream WHAT'S WRONG WITH YOU?! I know kids are honest, but come on, parents! Get it together and teach your children to be kind. I haven't had a lot of these encounters yet, though. But I know I need to be prepared for the frequency of them increasing as my little guy gets bigger and more involved. It's still fairly easy to largely ignore people when we're out, and I still manage to have feel all kinds of anxiety about it!

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  28. What a beautiful post. You handle your life with such grace and verve!

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  29. Anonymous1:26 PM

    There was just a very inspiring story on NPR about a boy born with no legs whos now running track and field in the paralympics. He is currently holding a world record, just under a record set by Bolt- the famous sprinter. A great listen on a young person's perspective on growing up and over coming.

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  30. Can totally relate. I want people to feel free to ask questions about our daughter, but sometimes I just want to talk about trashy TV too. We just moved again so the questions are all stirring up again. Last week we were invited to a birthday party as a family, but the birthday boy admitted to our older daughter that he didn't want Maaike to come because he was scared of her. We of course brought her anyway, but its a work in progress. I know one mom in your SNS posted about business cards for SN kids. Ironically a few days earlier and friend of mine in DC offered to make some for me. I'm hoping the cards will be a great way to allow families to discuss differences and how differences are beautiful. So that when we find ourselves in the next playground situation I can pull out a business card, hand it to the kid and say "go have your mom read and explain this to you. It'll answer your questions and tell you how special our little on is."

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  31. Anonymous8:46 PM

    I have been reading your blog for a while now but this post just hit home. I am the step-mother of a child with spina bifida. Not only do I deal with the "evil stepmom" bit as I struggle to figure out how to be a good mom with no "natural motherly tendencies," but I also really struggle with how other treat my daughter's differences. I constantly hear adults say "I will pray for God to heal her and make her normal" and I hear kids make fun of her for still wearing a diaper at age 5. It makes me angry that they feel the need to point out that she is different, but it also makes me so determined to teach her how self-reliant she is.

    I am tormented when others say "I am praying she will heal" and occasional even tell off my own mother-in-law for such ludicrous comments. SHE IS DIFFERENT... but so are you. There is nothing she needs to be healed of. She is perfect and she will have a great life because her family loves her. She will grow up strong and will be no better or worse for her differences. She will be the girl she is intended to be and no one can tell her that "God will heal her" because he already made her exactly as he wanted. She is perfectly different.

    We all have different battles and medals in life and I thank God for kind souls like yourself who completely understand how to relate those struggles and triumphs. Thank you for being so real and truly kind. Not only are your daughters and husband lucky to have you, but so is humanity. Keep up the honesty. You are wonderful.

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