Friday, March 18, 2011

So it Begins


Why is your baby so weird?

The words shocked me.  They came out of nowhere and slapped me in the face.  Taken aback I quickly assessed the situation in my head, OK here's your chance....You know these kinds of questions are going to come, especially from children, so try not to react and educate him.

Well, she was just born that way, I started.  See her left arm isn't there and her right arm is short and her legs are a little different too.  Stammering, stammering... Why was pointing this out?  He can obviously see these things... lets try another direction,  Some people are different on the inside and some people are different on the outside.  Do you want to touch her hand?  Breath in, breath out. 

All eyes were on me as I stumbled through my explanation, still feeling the sting of those words but trying not to let it show.  So weird.    Of course I wasn't mad at him, he was just a kid.  But...I was kinda mad.  Hurt.  Caught off guard.  Did he just called my precious, beautiful baby weird.  After I said the part about some people being different on the outside and some being different on the inside, his mother chimmed in and said, Just like you take medicine because your brain doesn't work correctly.  I have no idea what she was referring to--was he on the autism scale, does he have ADHD?  I don't know, but it helped bring a soft perspective to the situation.  If he deals with some sort of syndrome or mental illness clearly he doesn't understand the weight of his words.  Still, why didn't his mom correct him or at least apologize on his behalf?  Maybe she didn't want to shame him in front of a group of people.  Maybe his struggles are bigger than we see.  Maybe he needs our understanding and graciousness more than we know.  Maybe.  But either way, in about 30 seconds he moved on.   

But it was hard.

Now that she's getting older and the weather is getting warmer she's not in her car seat as much and not as covered  I'm starting to feel as though our sweet baby is a little more vulnerable and exposed to the stares and judgements of those around her.  Of course most of this is positive.  Almost everyone she comes in contact with ooohs and aaaahs over how beautiful and sweet she is.  Strangers love to come up and exclaim What a doll baby!  But the children--innocent and curious as they are--are starting to take more notice.  Story time at the library was filled with 4 year olds who couldn't stop staring at point blank range.  I get it.  I really do.  They're 4, they're innocent and interested in a little person who is unlike anyone they've ever seen before. 

But it's hard.  

I hate to think about Lamp growing and as she gets older and older in many ways she becomes less and less precious in the eyes of the world.  A baby with physical abnormalities is mostly received with tenderness and love.  An adult with physical abnormalities?  Not so much.  At least not as much.  I hope this doesn't sound bitter and pessimistic.  Children particularly can be full of wonder, but sometimes unwittingly offensive, and other times down right mean.  I want people to know her.  I want children to touch her hand and see her smile and laugh.  I want people to see her as we do--as a person--an amazing, gentle, beautiful and precious person.  Not a disability, and certainly not weird. 

So it was hard.
Thats all.       


ps--As a happy aside, guess who rolled over all by herself as I was typing this?  Go Lamp Go!  
pps--As I found out later, the little boy and the mother both do have a lot on their plate, so please be kind in your comments.  I was expressing my thought as they were happening in the moment.  

15 comments:

  1. Linda P.10:05 AM

    Dearest Miggy, Yes, it is hard. I know this first hand. When my special needs son was younger, some kid (don't know who) actually left a message on our answering machine making some hateful comment about his disability. Not a curious comment, but a premeditated, "Let's leave a nasty message about him on the answering machine" comment. It hurt. Fortunately, he didn't hear it.

    Then there are the "innocent question" times we have also had to endure. There is much we don't understand about our son's thought processes, so we don't really know how he feels when such questions are asked in front of him. "Why can't he talk?" a boy asked right there in front of my son a couple of years ago when he was about 20. (His speech is very hard to understand at times.) "Oh, he can talk," I pleasantly replied. "Not so much," said the persistent little commenter. What I really try to do is turn it around and start talking about the things he CAN do. I start saying things like, "Hey, did you know that he knows a lot of sign language!" (He's not deaf, but we taught him some to help in his communication.)"Son, show him some of the signs you know!"

    That is one helpful technique to use if someone starts asking questions that you prefer not to answer in front of your child. You can always start talking about some of the amazing things about little Lamp or take the opportunity to brag on Princess Sparkle Pants. You could say something like, "Yes, my baby was born with some differences, but you know, she has the BEST big sister who helps her a lot and I am so proud of her. Princess Sparkle Pants, tell him how you are such a good big sister and how you help your baby sister. You learn to turn the conversation so that you are more in control of what is said.

    Eek, I see this is long, but I hope that is OK. I really wanted to share some thoughts that I hope will help. Yes, it is hard sometimes, but I always try to make lemonade out of lemons, when they are tossed in my direction and bonk me on the head! Hugs. Big hugs!

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  2. Thanks Linda . I'm so glad you share your experiences as well...one of the great benefits of having a special needs child in this day and age...I get to hear from so many other moms who have been there. So thanks again.

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  3. You have such an amazing way of expressing yourself. I am in awe of your devotion for your children (and find it amusing to see that you, like me, think no one loves their kids as much as you do!!)

    I love your blog - and am thankful that you share your heart!!

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  4. I remember working at Huntington Learning Center for a year (a supplement learning facility after school hours) and at one point there was a boy there that was in Lamp's situation. And I will tell you that he was the most beloved teen there. And I believe that his situation made him a much stronger person. He was optimistic, smart, a hard worker and hilarious. As much as you want to protect your precious Lamp, she will adjust and be a better, stronger person from this experience. And she will amaze you and this teen boy amazed us. Hang in there, mom. You are doing a great job.

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  5. these bumps in the road of "hard" things will only prepare you and inturn HER to be able to answer the innocent with confidence and poise and the not so innocent (hopefully not for a VERY VERY LONG TIME from now) with equal grace and determination. You are doing an excellent job!!! go get em!!!

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  6. Miggs, I can't think of a better way to handle that situation than the way you did. You were kind and forgiving, but also informative, and in that sense you stood up for Lamp, which is also important. I think your reaction is going to influence the way your daughters react when they hear thoughtless comments. You're doing such a good job.

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  7. thanks for you blog. i have read it for YEARS now. i thoroughly enjoy it and i really appreciate how candid you are about your struggles and triumphs. i get a lot of strength from reading it. recently a girl asked my son if he was brain damaged(we are currently seeking help for some add/austism spectrum issues). i was so angry. verging on violent impulses(did i just type that?) but i keep having to tell myself that no one has it easy and we are all fighting our own battles. thanks for your words

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  8. Amy. Your writing. When I read this, I felt like I WAS you. I felt everything. It hurts!!! It's hard!!! Your words are SO powerful Amy- and I have a feeling that your gift for words will be a huge source of strength and power in the lives of your little ones as you stand up for them, educate them and others, and teach them how to properly cope with the hard things that will inevitably come their way. With your influence and power I don't doubt that your girls will handle their trials with the same grace and strength as their mother.

    Sending you love. To overflowing.

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  9. Anonymous9:06 PM

    Mignon! I have been a blog stalker of yours since we became friends on facebook. I enjoy your blog very much and your are as artistic and witty as I remember you in high school.

    You handled that situation beautifully. Both of your daughters will learn from you how to handle those kind of comments and questions.- Like you said, everyone is different, some differences are just more obvious than others. -

    My 6 year old daughter has a large hemangioma at the base of her neck. She has heard me answer the inquisitive questions about it before she was old enough to answer on her own. Now she nonchalantly rattles off our standard answer when asked about her birthmark.
    I once gently mentioned to her that if she every chose to, a doctor could do something to make the birthmark much smaller, she looked at me shocked, and said, "no, I love my birthmark, it reminds me of me". - Isabelle

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  10. Lauren11:03 PM

    I'm just a college student that stumbled on to your blog, but I have been following for about a year now and I always wonder what it would be like to be in your position (as I start to think about having a family of my own). I admire your approach. It wasn't until this post that I realized I have a cousin in a very similar situation. We are only a few months apart in age and grew up together. He has a muscular disorder that limits the formation/use of his arms and legs. I never thought about him as different, mainly because of how easily he speaks about being disabled. With my Aunt and Uncle's help, he has learned to embraced his position in the world and loves to share his story. I just did a quick google search to see if he has published anything specifically addressing how to deal with inquisitive people. I think this video does a good job of capturing all the good that can come out of a daunting situation:

    http://www.youtube.com/watch?v=1SP0bGGNCAA

    Boundless playgrounds is a really cool organization as well, might want to check them out for a few years down the road. They create wonderful playgrounds where booth Lamp and Sparkly pants can play!

    (To update the video, Matt will graduate from Harvard this spring and is excited to start law school in the fall.)

    Best wishes!

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  11. You know, in a way I am almost glad the first time is behind you, and I loved your answers. Next time won't sting as much. I hope not, anyway.

    I guess it is because our girls are so close in age, but for whatever reason, I pray for your family often and every single time Lamp crosses my mind, I just get the happiest feeling. She is truly a precious light in a dark world.

    And even though the thought of anyone ever saying anything to her (or any child for that matter) except how gorgeous she is breaks my heart, I know she is going to be just fine.

    Now us mamas on the other hand....:-)

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  12. I wonder about this all the time. Right now we dont face it, people just see Isabelle and comment on how cute, how happy she is. In a short period of time they dont see she is 14 months and can't walk, can't crawl, can't speak. As she gets older and the differences start becoming more obvious, I worry about what I will say. How can I teach people asking the questions about how special she is, rather than just resort to tears, or (more likely) anger and wanting the kick them in the shins for their rudeness. I worry about the best way to teach my son about his sister. We've tried talking to him, but he's still young, doesnt understand. Right now he see's her mostly as his favorite obsticle to jump over as he runs around the house. But I want him to understand how perfect she is, even if she doesnt seem that way in other people's eyes. I want him to be her greatest defender as they get into school. I want him to be her friend. And as much as I've thought about all this, I still have no idea the best way to address the questions and comments.

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  13. I think it is sweet that even though you wished his mom would have apologized, you are still worried about her feelings and don't want any of the comments harsh towards her. That speaks volumes about the kind of person you are.

    I have this strong feeling you will be teaching lots of people many things in the years ahead by your pure spirit.

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  14. Anonymous2:32 PM

    I know it's hard but it will make you all stronger. I guess Lamp turning over was showing you just how strong she is by turning over while you were writing your blog entry. Hang in there. That little girl will be a marvel and surpass all your expectations.

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  15. I am totally with Grandma Honey on this ... I was thinking exactly the same thing.

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