Monday, April 23, 2012

Tough Days

Everyone has tough days.  Most of us have days that turn into weeks, weeks that turn into months, and sometimes those months turn into years.  Why?  No one really knows, we all have theories, ideas, and our own opinions about why, but in truth we won't have the answers until we are gone and with God.

One of the moms on MyAutismTeam.com was expressing her need to spend a little time living in denial.  And not one of us parents on there blames her.  Living life is tough period, but living life when your child has Autism or an Autism Spectrum Disorder - can be brutal at times.   Sometimes those moments for me catch me off guard.  It can be something as simple as Elizabeth being at Children's Musical practice, when we lived in Wichita or she is dancing with the kids at VBS before it began and the children looked at her like she was weird.  Those moments are when suddenly it hits me - even with all of her gains and how far she has come MY DAUGHTER IS DIFFERENT!  And it breaks my heart all over again.  I've slipped into denial and I didn't realize it, then suddenly it all washes over me again.  Like children in need of organ transplants, most kids with Autism look like normal happy children.  A child with cancer is often noticeable because they have lost their hair, or a child with Down's Syndrome looks beautiful but they have certain things about them that shows they are different.  Autism has no one set look.  Our children look normal, happy, and healthy - they look like little Johnny or Janey down the street or in church or school, until they begin to flap their arms, rock back and forth, or speak to others.  

When Elizabeth was almost six years old and Beka was a little over a year we went to a restaurant to eat dinner.  It had been a long weekend and Chris spent the weekend at drill for the Army Reserves, I was tired, I was cranky and I was very hot (it was in the middle of the summer).  In the restaurant was a little girl who was so pretty and Elizabeth in typical Elizabeth fashion wanted to be her friend. 
Under normal circumstances I introduce Elizabeth and kind of smooth the way for her, but this time Mommy was tired, hot and I didn't do this.  I called Elizabeth back over when I saw how uncomfortable the little girls and I talked with her and kept her occupied a little bit until we were ready to be seated and didn't think anything of this encounter.   After the food arrived, I had to use the ladies room and in typical Lizzie fashion, she wanted to come with me.  Sitting in the pathway from our table to the bathroom was a table where the same little girl sat with her parents and grandparents.  I smiled and nodded,. then suddenly the smile left my face as we walked past and I heard her say, "Look Mommy there's the little crazy girl."  I kept walking, but I felt as if my heart had stopped beating for a few moments.  We kept going and finished and I seated Lizzie back at the table and sat down.  Suddenly, I knew I needed to say something, so I got up and I walked over to the table and looked at the family in the eye before sharing, "Excuse me, my daughter isn't crazy she's Autistic."  I had to stop, I turned quickly around and walked back to the table because I was ready to cry and I would have preferred to not cry.  After a short time, the little girl came over and apologized and we thanked her, but those are the moments when you can't live in denial because reality comes barging in through the door. 

For those of us with children who are Autistic, Down's Syndrome, or disabled in some way, those moments are some of life's cruelest moments.  Those are the moments we the world comes intruding into our worlds, the worlds we work so hard to make as typical or normal as possible. 

Someone told me once I loved Elizabeth despite her disabilities.  I looked them in the eye and explained, "No I love Elizabeth because of her disabilities and differences."  Is it heartbreaking at times?  Yes.  Do I sometimes yearn for her to be like the other children?  I don't know, maybe.  I know I worry about what will happen to her when Chris and I are gone and can no longer watch over her.  For that reason alone, I pray that God will return sooner rather than later - for those of us who have angels we worry over.    So do I sometimes live in denial and believe that Lizzie's improving and may be like others?  Yes, I admit it, I do at times. 

I hope you all have a good week.
In Christ,
Maureen

1 comment:

lettersfromlaunna said...

I can only imagine how challenging it is but your daughter sounds amazing, it also sounds like you are doing a wonderful job raising her:)