Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, January 29, 2015

I'm Not Sorry

I was trying to look up some new quotes to use in a blog about loving our children.   I decided to drop a few terms into Google and see what came up.  Below are some of the first results I read:

"Experts say you should never hit your children in anger.  When is it a good time? When you are feeling festive?"

"When children are doing nothing, they are doing mischief"

"The first half of our life is ruined by parents....the second half by children."

"The trouble with children is that they're not returnable."

Now anyone who knows me, knows I also have a hilarious side to my personality.  I have a great sense of humor, and can be sarcastic to a fault - yes, even about my own kids, especially on "those days."  And those are some pretty funny quotes. However, in light of a few events over the last few weeks, it made me think.....  All kidding aside, why is the default reaction to children and motherhood one of sarcasm and dismissal? I find this true with special needs as well. 

If anyone knows about bad days with the kids, I certainly do.  There are days my oldest has an emotional meltdown, while my second wants to constantly run off energy but it's rainy outside.  The middle one is wanting attention and doesn't know how to speak in an 'inside voice,' and my 5 year old feels that with all this going on, it is perfect timing to do something destructive, preferably something that takes a long time to clean up.  Meanwhile, Meagan is fussy or having a seizure day and wants to be held, or the dog needs to be fed and let out, and dinner still has to be fixed, among 500 other things that have to be put on hold. Even more challenging is when these things happen in public - when some of the girls are fighting while others aren't listening etc etc... If you are a parent out there, you totally get this.  And kids just have the best timing don't they? ha...

However, there is always 'someone' who feels the need to approach us and say "Wow, you must want to run away!."  But the worst is when I get questions about Meagan specifically.  To clarify, I love questions about Meagan and talking about her or educating others on how amazing she and her friends are. And typically, I see people leave from talking to us with a much more open heart and mind and it's a wonderful conversation.   What I mean by 'Meagan questions' being 'the worst' is when the reaction is one of pity or sadness.  This just happened at Target last week when a woman asked about Meagan's age and after I said "3 1/2," proceeded to ask about her small size, leg braces etc...  I dutifully and kindly explained in general about Meagan's life and after answering a few questions, the woman's response was "Wow I'm sorry you have to deal with that all the time!" and "Oh I am so so sorry for her.  Poor child." I really didn't know what to say, so I smiled and we parted ways.  I am sure the lady is a very nice woman - but...... she didn't get it.

Last week, we took the girls down to the dance studio to practice.  While the older four girls were reviewing their steps for their upcoming competition, Meagan was scooting around the other studio checking things out.  She was giggling and singing to herself, but then I noticed she was rather quiet.  When I looked into the room, I saw her just sitting there staring.  She was looking at herself in the mirror.  She just kept staring and then started doing things and watching her reflection perfectly mimic her actions.  She brushed her hair out of her eyes.  She looked at her eyes.  She touched her nose, her mouth, and her shirt.  Each time carefully watching her reflection do the same.  She seemed to almost be filled with wonder at how this was happening. I thought of the people who said they were sorry for her - and immediately felt sorry for them.  Here was my little miracle girl looking in wonder at every beautiful part of her.  Oh what those people are missing.

In the last week, we have remembered the anniversary of Roe v. Wade and within days also had the International Day of Acceptance.  Before Meagan, of course, I was not as aware of the latter  - but since her birth, I have learned a lot about it and how important it is.  I am also realizing how appropriate it is that the two days are so close to each other. They almost go hand in hand.  How can we accept diversity in our children when we accept it's ok to discard them? How can we celebrate differences when mothers are counseled that differences during pregnancy are "sad," "wrong," or "just too hard to deal with..."....  

I guess when I think about it that way, the comments of pity about Meagan or downing our busy life with our beautiful kids are not that out of place.  We breed those mentalities in our society.  We shape people to value life.....selectively.  We have moved child bearing from an honorable thing to a check off the to do list.  We have taken the blessings of our differences and used the knowledge to weed those out who would offer diversity in our world.

We can change that, however.  Through kids like Meagan, we can learn so much.  Differences can be challenging.  No one denies that.  They can even be scary.  And that's ok.  We are all human - we aren't perfect.  But we are also beings of learning.  We can take the intimidating nature of diversity and turn it in to something wonderful.  Something beautiful.  And by doing that, something familiar.  Every time we do that, the next step isn't as hard....and so it continues.  This happens within our own families, but then spreads to our extended family, our close friends, and then eventually to those strangers who see us at the store or school.

I have seen this happen in several areas of our life, including at my older girls' activities.  I am helping teach at a few classes at the dance studio now.  Typically while I am teaching, other dance mom friends will play with Meagan and watch her for me.  Last night, I came out and Meagan was so tired.  She was curled up on my friend's lap and very snuggly.  She was all cozy in her sweater, looked up at me, then buried her head in my friend's chest, and then fell asleep.  Meagan physically resting so comfortably on my friend was a perfect depiction of how we feel as a family - with the ability to "rest comfortably" in the friendships of so many near us who have not only had open hearts and accepted Meagan's differences, but who go the distance when we need that little bit of support.  Friends who don't bat an eyelash at helping her......who don't hesitate to help us.  Meagan's differences have actually brought our family togetherness with so many special people who have enriched our lives in many ways.  That's something the doctors won't tell you.

One of the most beautiful things I have seen is how love from Meagan spreads through  the community.....well beyond blood relatives who almost have the "obligation" to love her.... in to many hearts of friends, acquaintances and even strangers who never anticipated what was about to happen.  I have loved watching close friends become almost 'pseudo parents' to her if I am busy with one of the other girls, or teaching a class.  There is no hesitation to scoop Meagan up and just love on her.  Seeing her big twinkling eyes and her sparkling personality, it's almost impossible to resist being drawn to her.  So, to the woman at Target, (who I'm sure is truly a lovely person), I guess my answer is, I'm not sorry.  I'm not sorry Meagan came into our big, loud and loving family.  I'm not sorry my daughter has some challenges she has to work through.  I'm not sorry life is hard. But I am sorry that you won't see what our close friends see.  I am sorry you won't get to enjoy Meagan's beaming smile or her absolutely hilarious personality. I'm sorry you won't feel the warmth of her little body sleeping in peace on your lap.  Most of all, I am sorry that her differences brought on a judgement of pity for Meagan instead of the realization of joy in Meagan's soul.

As Mother Teresa said, "If you judge people, you have no time to love them."

Whether in the womb, or in the store, I'm hopeful that through kids like Meagan, there will be more love and less judgement for children with disabilities.  I'm hoping that as time goes on, and we have more people exposed to the wonderful differences these children offer, my internet search on quotes about children will change to more positive results. More awe at their little beings.  And more acceptance of all children, no matter how they arrive.

Let's send messages of love and acceptance, for mothers who may be facing a difficult prenatal diagnosis, and for mothers who have children already here facing different challenges day to day.   Perhaps one day differences won't be feared, but welcomed.  Let's give all children a chance to look in the mirror as Meagan did, and marvel at the wonder of their God given reflection. After all, children are the living messengers we will send to a time we will not see. How can we send them if we do not accept them from the start?

*****If you would like to do something tangible to "pay it forward" and honor life to help other children like Meagan, her webpage at CURE Hydrocephalus is still up.  Any donation is greatly appreciated by families around the world who do not have access to the education and medical interventions that Meagan does here in our great country.  Thanks!  www.cure.org/me/meagan ****

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