Wednesday, September 04, 2013

The Weight of The World

Part of a little series I've been writing about the idea of grace.  Click here to read parts 1 and 2.  

Sometime in the early summer a group of friends and our kids attended a play at a local children's theater.   We spent sometime afterwards mingling outside, moms chatting with kids running and playing.  I spotted Lamp sitting in between 2 sisters who happen to go to our church.  They were perched on the steps just talking and being adorable.  These girls are sweet, kind and already friends of ours.  I say that so you understand that Lamp is not new to them and that they are wonderful girls.

I sneaked behind them a little closer to get a picture of the trio and heard the older sister say to Lamp, Your hand kind of looks like a foot.

I know,  said Lamp, in a deflated voice.  My heart sank a little.  The girl wasn't being mean, she was just being a kid--honest and blunt.  But it was hard to sit and watch my not yet 3 year old have to handle that situation at this tender age, all on her own.  I don't know what she felt, but I know she felt something.

A few days later I was talking with Lamp about going to preschool in the fall.  She has been eager to go to school for a while.  I explained that I wouldn't stay there with her, but I'd drop her off then pick her up just like we do for sister.

But the kids will laugh at me mom.  This time my heart actually broke.

Why will they laugh at you?  I asked, knowing the answer but wanting to address her specific concerns and help her verbalize them.  I pressed and finally said, Is it because your arms are different?   She nodded.  I reminded her that she has many friends and they love her so much.  I told her that when the kids get to know her they will love her too and will want to be her friend because everyone wants to be her friend.

Not everyone wants to be my friend.  She said.

Once again my heart... she had remembered an incident from a few weeks earlier about a little girl at the story time who kept telling her she didn't want to be her friend.  The little girl was probably about 3.  The sweet part of the story is that she had a 5 year old sister who was right next to her and was actually scolding her, That's not nice.  Don't say that.  I want to be her friend.  I was so grateful for the example of an older, but still quite young, sister.  But still, I was heartbroken as I saw Lamp sitting there, expressionless listening to the words of a peer and knowing they were hurting her little spirit.  In these instances I usually step in and try to coach and help the child understand.  I know I did that to a certain extent here as well, but I honestly can't remember what I was doing and how I was reacting.  When I play it back in my mind it was sort of like watching a bad dream where your reactions are in slow motion and you can't escape whatever darkness or impending doom is descending upon you quickly enough.  However quickly I did or didn't react, the damage was done.  The little girl had said hurtful things a few times and my precious baby sat there emotionless, taking it in, hearing these words and knowing it was because she was different.

I wanted to shrug it off and tell myself she didn't understand what was being said or why, but she couldn't stop talking about it as we left the bookstore.  That girl didn't want to be my friend.  That girl didn't want to be my friend.  I tried to remind her that the other girl wanted to be her friend.  And then I stopped.  My baby was hurting and me trying to sweep away the bad didn't alleviate the pain.  So I stopped, and I said, She hurt your feelings didn't she?
Yes.  She hurt my feelings.  She said as she buried her head into my neck.  

She still loves going to story time, especially during summer when her big sister there with her again, but more than ever she chooses to remain on my protective lap.

We have officially transitioned to a place of knowing.  Lamp knows she's different.  She feels it and she sees it in the faces of peers around her.  We knew it was coming someday, but someday is here.

And it can be hard.

People used to be surprised how well she talked for a 2 year old, now it seems that when people find out she's 3 it's her size that throws them off.  She is so petite.  If I had to guess I would say she's smaller than most 18 month olds.  But 3 is still 3 no matter your size, and I think it's the fact that when I look at her dainty shoulders and petite frame I am even more astounded by the weight those little shoulders have to bear.  Sometimes I can't believe she has to deal with burdens and heartache that come in the form of prejudice and rejection at an achingly tender age.  Is it really prejudice when it comes from little children who lack the developmental skills to make rational judgements?  I don't think it matters to her.  And it's not only small children that we've had to deal with, so there's that.

But I also know she isn't the only child to ever have to do hard things.  Illness, abuse, neglect, hunger, disabilities... all these things have happened to children her age and younger.  And older.  Life can be painful in all sorts of creative ways.  I know my daughter hasn't been singled out.

Add this all to the fact that I'm having a hard time finding a preschool that will take her in the first place.  I'm in the tough position of needing to be extremely honest about the extra help she will need while also letting them know how wonderful she is.  That she was blessed with patience, kindness and a joyful disposition, not to mention she's smart as a whip.  And while she sounds very needy physically, she is in fact quite independent and wants to do as much for herself as possible.

So far, no takers.  (Since writing this post this has changed!  Yay!)

Here is the point:  There is part of me that wants to be angry.  I want to be angry not that my daughter has 'handicaps' but that hers are on such public display, while most of us get to conveniently hide our weaknesses from the outside world.  Wouldn't it level the playing field quite a bit if we all had to walk around with our handicaps clearly labeled on our foreheads:  Arrogant, Liar, Manipulative, Bigot, Irritable Bowel Syndrome.  And a part of me wants to cry foul and yell discrimination for these preschools who don't feel that they have the necessary resources to allow my beautiful and bright daughter to be a part of their school, because it really is more possible than impossible.

But I'm not angry.  There is a part of me that wants to be... because there is a sense of imbalance and injustice, but I'm not.  I really do think the preschools I've talked with wish they could make the accommodations, but right now they don't have the resources.  At least they don't think they have the resources.  I know most kids are sweet, kind kids who don't know any better, but can and hopefully will learn better.

But it still hurts--sometimes a little, sometimes a lot.  If there is a lesson here, I think it is this.  Often pain is a trigger that something is wrong and needs to be righted--a broken bone needs to be set, a deep gash needs to be stitched.  The same often goes for emotional pain as well--betrayals, hurtful words and snubs need apologies and/or forgiveness.   Pain is such a common trigger for justice and restitution, that our knee-jerk reaction may be that anytime we feel pain (or anger or frustration), we feel that someone or something else must be accountable for it.  And I'm seeing this as a more and more common trend in society.  Road ragers take out their frustration in increasingly more and more violent manners.  Meekness is no longer a valued trait but rather a sign of weakness, because if you give me a dirty look or a cross word I will get in your face and show you that I will not back down.

But a lot of times life is just unfair.  Really unfair.  Sometimes painfully and tragically unfair and often there is no one to blame but life itself--accidents, illnesses, mistakes, misjudgments, and genuine ignorance.  Trying to find a target for all of our pain, anger, and frustration will likely result in only more pain, anger and frustration--for others probably, but most definitely for ourselves.

I'm not a pro at this, as I've stated before meekness and humility are not natural to me.  But ever since hearing that little word grace, and making a commitment on how I would react to those around us it has become easier.  But showing grace to others is only half the equation... probably less than half.

As I've come to learn, grace isn't something just to be given, but also to be received.   In fact, I'm willing to bet that my increased capacity to give grace to others is because I've been on the receiving end of grace as well.  Being on the receiving end of grace, also means I don't have to make a person, a child or an institution feel responsible for the pain we sometimes feel in these situations.

If my faith and my theory are correct, grace can swallow that pain whole.

*art--no these are not my paintings, which is why I'm linking to the source.  :) 


  1. Dear Miss Miggy.

    I love this post. My heart breaks for little Lamp too, but as ever I am just so glad that she has such a thoughtful loving mother.

    It is just so poignant that her disabilities are visible. The line about her tiny petite shoulders bearing so much really resonated and my heart goes out to you both.

    Wishing you all the best xxxx

  2. Hello Miss Miggy
    What a post. Visible differences are so difficult to cope with as a child, because children are afraid and often don't want to be seen with someone who looks different. I do love that you mentioned the older sibling scolded the younger one, encouraging some kinder words.
    Sometimes I look at people's reactions to my difference and realise they really are quote mortified they spoke their feelings out aloud. While I am generally polite in my responses, I can't help feel a little laughter when I see they're more uncomfortable about the way they reacted to my appearance than my appearance itself.
    Thank you for writing.

  3. pallavi8:27 AM

    I wish Lamp all the best..
    On a different note, I was wondering why you don't have a facebook link n your page so that viewers can share and hopefully increase awareness among adults and kids.

    your blog has definitely changed me and my perspective,.

  4. Miggy! Lamp! You are amazing and can do hard things with joy and love. And this is really hard. I can't wait to hear about the preschool. I hope it is going well. While this challenge of facing hard things and insensitive people and differences is especially acute for Lamp given her unique physical body, it is also universal in another way-- we are all different, we all struggle, we all want to be accepted, and life is a bit rough and tumble for all of us. And as parents, we all want to protect our children from any sort of discomfort or hardship. I realized that while I'd rather have easy breezy life, that is not realistic, nor would it really be rich and full. You are such a great mom to help her process these things and to surround her with unconditional love and opportunities to be independent. You inspire me, and I hope that as each of us cultivates more love and light in our lives, life will be a bit easier for all of us, even in these challenges. I feel your struggle. I am impressed with your response. May you be comforted and strengthened and have peace to know that you are not alone.

  5. Anonymous11:17 AM

    What a powerful post. Reading it, especially the part about weaknesses that are able to be hidden, really resonated with me because of a different struggle in my family right now...addiction of a family member. Thank you for this very special series on grace.

    Prayers that the new school is a great experience for Lamp and that her little personality shines!

  6. Anonymous12:15 PM

    You are truly an amazing, inspiring mother. If every child could be so lucky to have a parent like you. Your sweet girls are blessed.

  7. Wow Miggy. This post is so powerful. It makes my heart ache, too, thinking of Lamp "knowing" that she's different.

    I think a lot of times the insensitive comments come from a place of fear; in adults and kids, it's a fear of the unknown. I know that before I found this blog, I might've been afraid to say hello to you and Lamp at the grocery store, afraid of invading your space, afraid of looking at a disability that I didn't understand.

    You've really changed that in me, both through your story and with your spotlights. I've made a promise to myself to never be afraid again. I will say hello, and I will smile, and I will always do my best to make sure little girls like Lamp never feel like I'm looking at them any differently than I would look at ANY adorable little girl.

    But with this series on grace I've realized that this change in me might not be enough -- I have to share, the way you've chosen to share, this insight with the people around me, starting with my own kids. I'd like to show them a photo of Lamp and talk about WHO she is, and why that's so much more important than HOW she looks different than they do.

    I know it's just a drop in the bucket, but still... it's a drop! One drop at a time, right?

    Big ((hugs)) sent your way and I can't way to read about Lamp's first day of school!

  8. Anonymous3:35 PM

    I enjoy reading about your stories.
    I'm sure you are well aware of this, but kids with disabilities do have educational rights according to federal law starting at age three. My own experience is that often times you will need to be pushy about this with the school system, so don't be afraid to press them on finding a place for Lamp to go!

  9. Anonymous3:39 PM

    Hi Miggy-
    I recently started reading your blog and truly love it. Your openness and honesty have been quite refreshing. Thank you for sharing!
    My own grandfather (Bamp) was born with one arm. He was the strongest (emotionally as well as physically) man I have ever known. He was,is, and always will be, my hero. My biggest regret is not spending more quality time with him during his last years. Anyway, I could relate to your own family dynamics on a very deep and personal level.
    I just want you to know that I feel you are doing a GREAT job as a mom! I'm sure you already know this, but sometimes it's just nice to hear from someone else...even if it's a stranger.
    I am actually an Orthodox Jewish woman who lives in NY. My faith is extremely important to me as well. A few years back I went back to school to finish my education and became a social worker. I love working with children, especially special needs (foster kids as well). Anyway, your latest post really hit a chord worth me. I felt your pain. But, I want you to know that the way in which you handled the comments the two sisters said to Lamp, was wonderful. Empathizing with her and recognizing Lamp's feelings was extremely important. It helped Lamp feel heard and understood. How often do human beings get to have that extraordinary experience?
    We, as human beings, very often want to obliterate "bad" or "sad" emotions that our children (and others) feel. Of course we want them to feel better. That's a natural response. But, very often, it is really our own personal, subconscious issues we are contending with. In other words, it is really US who can't endure the pain and sorrow. To remedy our OWN anxiety we may rush in to make them feel better, fix the problem- ignoring the wound altogether. Children will often shut down and avoid sharing painful situations with their parents because they pick up on this, and know that mommy or daddy can't tolerate those "icky" feelings.
    However, by you recognizing her hurt and enduring that painful moment yourself, you were able to give Lamp your unconditional love and support. You became her container for the pain. You listened to it and sat through it. That is one of the greatest gifts you can give to this child...just the ability to listen and be present. Kudos to you Miggy!!
    I will suggest one more thing... if she talks about a particular child not wanting to be her friend, you may want to add (after empathizing),that there have been various people in your own life, or sissy's life, that have not wanted to be friends for one reason or another. Some people don't want to be friends with others because of skin color, religion, etc... we all have experienced this one way or another. And we have all been laughed at as well. She is not alone.
    Anyway, please keep on writing! And enjoy that beautiful family of yours!

  10. Love this. Thanks

  11. This makes me so sad for you and Lamp. I am glad that she now has a pre-school. Where I live there would be options. I don't understand turning her away. I do understand that they may not be able to accommodate her......but how hard would that be. If she was near me I would restart the pre-school in my home just for her. She is not only very verbally but very smart for three years old. Maybe that is a gift from God. Lamp may need that little boost. I have handicapped son......not visually but mentally. We have had some strange comments and very rude ones. He is now an adult and has gotten very overweight. So now he has two reasons to be made fun of. I know how your heart hurts. Lamp's situation is harder than my son's was. Oh how I miss you were near me. I would want to give you both a big (((((HUG))))

  12. This post made my heart heavy... but it makes me so happy that at only 3 years old, you're already teaching Lamp that it's okay to talk about it. In my family we always kept our problems to ourselves. For the past year I've dealt with depression and was recently diagnosed as bi-polar. I know it's a very different situation to Lamp's, but what made my situation so much harder is that I was never strong enough to talk to ANYONE about my feelings even though my erratic behaviour made it painfully obvious to those around me there was something wrong. As a student living away from home it was easy to kid myself it was just because I was stressed and tired when really, I was very ill, but it was hard to admit because there's so much stigma surrounding mental illness - especially amongst those in my age group. Already, Lamp is so strong, and I wish I had even an ounce of her determination when my fight began. Being able to verbalise one's feelings and listen to encouragement is, I think, the path to acceptance, and I've learned that now. Your fight for her brings tears to my eyes. Thanks for having such an encouraging and inspiring blog.

  13. Jennifer from Lakeland, FL7:21 PM

    I agree with some previous comments - this post is powerful. It didn't make me sad, per se, but I am sad Lamp has to deal with this. I think what she may lack physically, she has been doubly (or extra) blessed with patience, personality and intelligence. Lamp is very lucky to have you as her mother. You articulate things so well. You are going to teach her amazing things to help her cope with her differences. This was a very well written, thought provoking post. Thank you for sharing.

  14. Christine8:19 PM

    It truly hurts my heart to hear what Lamp has to go through with the other kids! She has such a strong little spirit!

    I just want to say that she is so lucky to have you as a mother and I think you are doing a fantastic job.

  15. I love this. LOVE the series. And your ladies.

  16. Beautiful post! It's very interesting to read your perspective on all of this. I feel for you and Lamp. I imagine that this will be quite a difficult time for her. I know it doesn't really help Lamp right now, but my girls absolutely adore her, and I'm sure there are many others who feel the same way.

  17. Thank you for this post. It was wonderfully written and just what I needed today:)

  18. I can imagine that it's incredibly exhausting to have to deal with reactions all the time when you just want to go out and enjoy things with your daughters like a normal family (which you are). However, I find your patience, understanding, and, yes, grace when dealing with these situations really remarkable. Lamp is lucky to have you! And, of course, you're lucky to have her!

  19. Anonymous2:14 AM

    Miggy, I'm a mother to a nearly 3 yr old girl and my heart aches that your lovely Lamp feels different at such a young age. A bunch of somewhat random thoughts on your post:
    - at some point in our lives, we all face rejection. In my case starting at the age of 7 because of my ethnicity. At that age I had a strong enough sense of self to not be bothered by racist comments. I pray Lamp grows to realize she is beautiful as she is, and that true beauty comes from character and what's inside.
    - lamp is very advanced verbally for her age, smart girl!
    - I hope preschool is a good experience for her, and if not, it may be better to keep her home until she's required to start school, or find another school. For some kids not having the security of their mother around may make them more insecure, especially at such a young age, so another year at home may boost her confidence. I live in the UK where the child has to turn 3 before September 8 to start preschool this year, so my nearly 3 yr old will have to wait another year to start. And preschool isn't mandatory, so I will most likely skip that for my daughter and send her to pre-k instead, when she will be turning almost 5.
    - your post made me realize how important it is to talk to kids about others differences, I will definitely do that with my daughter! Thank you for your insightful blog.
    - my husband developed vitiligo from the age of 5. He doesn't remember any rude comments or rejection from peers, but he is his own worst critic and his appearance makes him feel insecure. Physically, everyone has something that they are insecure about or a health problem that can't be seen by others.

  20. It’s so sad that other people make our already difficult lives even more so. My daughter has autism. Our outings would be so much easier if people would just leave us alone. Beautiful Lamp. I wish I could take away her pain.

  21. Anonymous2:23 PM

    these words are beautiful. you and your lovely family are amazing.

  22. Achingly beautiful. My mother's heart is heavy for the pain that Lamp has to deal with, especially at such a tender age. This is indeed a vulnerable time and I wish you all extra strength, comfort and peace right now as you transition into the school years and her realm of influence extends beyond the safety of your home. That is not easy for her or for any of you. For what it's worth, I have SO much confidence in Lamp's inherent strength and ability to thrive. She has been blessed with very special resources- including an amazing family- and I pray that any pain she encounters will be swallowed up by grace, completely. She has already inspired so many of us who know her, and I don't doubt she will continue to do the same for all the new people who will shortly cross her path. Sending a tight hug and extra support right now...

  23. Just wanted to say thank you for this post. I've been feeling my own hurt today related to one of my kids and even though the circumstances are different this post just really helped me feel more peaceful about the situation.

  24. I'm making my students read your blog again this semester. So, excite for the ways your grace will change and persuade them.

  25. Anonymous2:19 PM

    So hard for me to read this right now - my daughter is 2 yo and still blissfully unaware of her physical differences. I love your idea of everyone wearing their differences on their foreheads! I've often thought my daughter is not unique in being different, it's just that her differences are more visible than everyone else's. I'm not sure I'll get to that state of forgiveness as quickly as you have managed to, when I first see someone hurt my daughter, though I know ultimately that is a healthier place to be, mentally. But I have to disagree with the idea of sheltering her that another commenter made. My daughter has been in daycare since she was 3 months old, and I think this has made her more confident to have this extended "family". It is small enough that there is a single playground for all kids over 18 months, and they have an after school program, so she regularly experiences older kids fawning over her, picking her up, etc, just like they would with any other baby. And I'm certain that if any of the older kids ever said something negative about her differences, the teachers would be very quick to correct them. They treat her like any other kid, and this, to me, is a fantastic experience for her. I truly hope that you and Lamp can find a similar preschool home!

  26. Ellie2:25 PM

    Hi Miggy, again your blog is beautiful and poignant. I am so sorry Lamp feels different. Just this morning I came across an article on Nick Vujicic if you don't know him already
    As a child my only contact with someone with a limb difference was a boy with a missing hand at school. He would growl and shake his stump at us and not come across as friendly. I don't think we even dared talk to him let alone tease him and he didn't stay with us. I wonder how things could have been different. I wish you a lot of strength as you navigate this and know how hard it is to change feelings and ideas, let alone those of the people around us...

  27. This post is so close to what we are going through at my house right now, my older daughter has a mild form of epidermolysis bullosa (EB), she is now 9 and is starting to realize how her skin looks to others. She recently lost 3 fingernails and came home from school telling me how hard it was to hide her nails all day from everyone, my heart broke knowing she felt like she had to hide. Time for me to meet with her teacher and see what I need to do to help other children understand that although she often has blisters and healing wounds on her hands she is still like all of them, she yearns for friends and doesn't want to be different but always will be, we know how awesome our kids are and its hard to understand why other kids don't see that too. I am also going to see if the school has a counsellor she can go and talk to so if she is feeling isolated or other kids are being mean to her. It is so hard to tread these waters and I wish you all the best. Thank-you for sharing, it is comforting to hear from someone else experiencing similar bumps in the road.

  28. I know your heart was hurting because Lamp's heart was hurting. Lamp is so blessed to have you as a mom.

  29. "Grace can swallow pain whole" I just love that and is a good reminder when we all hurt inside for various reasons.

  30. It's been awhile since I checked in here. Just wanted to say this post really touched me. You expressed yourself so eloquently. I can't imagine a better mom to navigate such tricky situations. Thinking of you!

  31. Thank you for a great explanation. I was looking online for a similar idea and really appreciate it

  32. The fear I feel for my tiny little girl when this day finally comes for us is overwhelming and almost debilitating. Thank you for expressing the way it feels so clearly.