Thursday, March 01, 2012

A Good Fight


*I am way behind in a bunch of Lamp-related posts.  Often these types of posts take days to write and before I know it,  days turn into weeks.  I've had a lot on my mind lately in regards to that sweet little babe, so this may end up being a little mini-series on Lamp.  Hope you enjoy.    


As I listened to the mom in the waiting room of our therapy office I couldn't help but take some mental notes of her daughters situation.

Born premature, failure to thrive, almost had a g-tube but so glad they didn't go that route, talks really well for her age, etc.

One look at her daughter and I can't see any obvious physical differences.  To be honest, I don't know exactly why she goes to therapy...it sounds like she needed a little extra help.  As this mom sat there cataloging all her daughters issues to the attentive therapist I grew more and more smug.

Almost had a g-tube.  Oh how awful for you.  

I felt like she was grabbing for straws at all the worrisome problems their daughter (almost) has.

You wanna talk about problems?  I thought to myself, I'll show you problems... 

And that's where I have to stop myself.  I can't play that game.  Even if the playing field is only in my head.

It's the game where no one else's kids have problems as hard as my kids' problems.  Or the game that no one ever says the right thing and no one really knows how to relate to our family.  It's a mindset that is within reach if I want it.  A sword to draw at any time to cut someone else to the quick and remind them that Hey, I've got the right to complain.  

But I don't.   At least not more than anyone else.

I allow for feelings of genuine discouragement and heartache.  I have the right to grieve from time to time and even worry about unknown scenarios in unknown futures.  My biggest worries stem from the social aspect of my daughter growing up, and how others will treat her.  Regardless of my belief in a Savior and eventual eternal joy, I have always felt that there is a time for sorrow and tears.  So I don't feel guilty about true feelings of sorrow and grief.

What I sometimes must guard myself against is the prideful side of comparing and self-pity.  It's a poison I don't want to get caught up in and least of all something I don't want to pass onto my daughters.

From the outside it could be hard to tell the difference between genuine sorrow and prideful sorrow, but on the inside I know which is which.  If I could sum it up I would say genuine sorrow is a part of grief that when addressed may help in the healing process and compel you to keep moving forward.  Prideful sorrow if given root would only continue to fester and boil, stunting growth and progression altogether.

Anyway, here's the point.  Early on when we found out about Lamp someone sent me a video of an older boy (teenager I believe) whose name I don't remember with a condition I can't put my finger on.  But I remember he was in a wheelchair.  He had done extraordinary things like build an all access playground that would allow for children of all ages and abilities to play on and I believe he was accepted to Harvard as well.  What really stuck with me was when he talked about his parents and how they raised him and I remember him saying that his parents taught him to carry himself with dignity and to remember that his problems were no better or worse than anyone else's problems.  And I knew he was right.  I seized that golden nugget of truth and immediately tucked it away into my heart.    

Doing the Special Needs Spotlight helps me a lot in this regard.  Through all these spotlights I see a variety of circumstances, a variety of individuals, a variety of abilities and yes a variety of disabilities.  Yet, time and time again I see a happy families.  And I see LOVE.  Of course some children I've spotlighted require much more intensive care, and some children are in more physical pain than others--which I do think makes their particular journeys more difficult.  I certainly don't want to take away from the very real difficulties many of these families face.  It's real.  But so is the love.

It's not always easy seeing the cup half full and counting our many blessings.  I am only human afterall.  But I'll keep fighting the good fight of resisting prideful comparisons, and the ease of excuses and pity.  When Lamp was given her baby blessing (something we do in the LDS faith) there were many things that stood out to me, but this one thing maybe more than any other.  She was reminded to have gratitude for all the blessings she has in her life.  And I smiled.  Because I knew it was true.

     

There's a great talk by a man named Neal A. Maxwell entitled Content with the Things Allotted Unto Us.  He even mentions his own granddaughter who was also born with limb differences.  Read it here.   

11 comments:

  1. Absolutely loved this post! I have spent a lot of time with special needs people throughout my life. I have five children, none of which have special needs, but all of which are still very special to me. I still have some very real, heartbraking challenges in my life, everybody does. Whatever a person's challenges, it's the love that matters. Well said!

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  2. This is one of the biggest lessons I've learned. When Sonja was first diagnosed with autism, I would listen to friends stress out that their children "sassed back" to them, when I would give everything I had to have my daughter sass back to me one day or even say I love you and mean it. Then I realized if we weren't in this situation, I would be complaining about those same "normal" problems. And Sonja has tons of strengths that I am very grateful for. Now I can respond to my friends' problems with sympathy rather than judgement, realizing that we all suffer. Whether someone is suffering more or less than you is hardly the issue. We all need understanding and love. Your blog is awesome, btw.

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  3. Anonymous10:57 AM

    Dearest Miggy,

    Well said. Your family is lucky to have you . You are wise beyond your years. And you have the rarest ability to put your feelings and unique perspective... (a perspective born of deep reflection)... into words. Those words seem to loft upward like a fluttering dove and carry the reader's soul to a better place.

    Thank you "Lovey"!

    Love,
    G.G. (Mom)

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  4. Beautiful way of thinking. Love this post.

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  5. Beautifully said. Great comparison of genuine sorrow and prideful sorrow. GG is so right, you have "a perspective born of deep reflection," which I admire in you so much.

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  6. This is so true, for many of us. It is easy sometimes to slip into the mindset of "Really, you think THAT's difficult? Imagine our life as we deal with xyz". And in the end, it doesn't matter. Our lives are our lives. We must look at them as blessings and cherish every moment of them, and yet be able to grieve and be bitter on our own schedule.1=

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  7. Truth- this rings with truth.

    Thank you.

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  8. Linda P.10:08 PM

    Thank you for sharing this, Miggy. You have put into words the cry in the heart of moms with special needs children. I so relate to the struggles of comparing our kids with "normal" ones, but I also try to remember to rejoice in the blessings, as you have! This post was very meaningful to me. Thank you.

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  9. I loved this post, and the analogies you drew - the playing field, the sword... It is hard not to be irritated with "simple" complaints of others, but you're right, everyone's problems feel like problems to them. Appreciate your honest perspective.

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  10. Just saw this and thought of you. There was a special on ESPN that you could probably look up as well.

    Thanks for writing!

    http://www.huffingtonpost.com/2012/01/17/kyle-maynard-quadruple-am_n_1209654.html

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  11. I just happened upon your blog and I want to thank you for sharing your perspective on being a mother to sweet little Lamp (who is adorable!!) My 17 month daughter was also born with multiple limb differences. As I've read through your posts I feel so much of a connection to your story, your feelings, your journey. Thank you for making me feel "normal" :)

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