Monday, February 13, 2012

"What If....."

At some point, when parents learn that their child has a disability, the majority ask themselves many different questions. "Why me?"  "Why them?"  "What did I do wrong?"  "What could I have done different?"  "Is it my fault?"  "How am I going to get through this?"  "What will happen to them when I am gone?"  The questions go on and on, and can be all consuming.  After the intial shock of a diagnosis wears off, it becomes a little easier to compartmentalize the questions, to deal with them one at a time, as the issues arise.  Some questions are never answered, most questions are never answered.  Some questions are  avoided or ignored.  Some questions are just too painful to admit.  A question that I know alot of these parents face, if they want to admit it or not, is "What would they be like if they were normal?" or "How would my life (and their life) be different?"  This is the most difficult question, because on one hand it forces the parent to visualize what they can never have, and it also insinuates that they do not love their child enough to accept the life that they ended up with. 

I do not think in all honesty that any parent wishes for a child with disablities.  It is true that there are all different levels of acceptance, but to acutally wish for, and dream of, and plan for a disability is really probably rare.  However, you can picture a mother praying for a little girl to dress up in  ribbons and bows, maybe two little girl sister princesses.  Or a father praying for a son to throw the football around with.  Maybe the parents plan together for a boy, then a girl, an older brother to watch over his little sister.  They might envision dance recitals, or championship football games, college scholarships or planning weddings, and grandchildren.  When they get the diagnosis from their childs doctor, however, those dreams come crashing to a halt.  Now, I am not saying that the childs life is over, that they can't accomplish great things and live a fullfilling life.  But it is hard for a parent to imagine any of their own dreams for that child being realized, when they are now facing a lifetime of "different".  Different abilities, different challenges, different achievements, different friends, different milestones.

When I found out that I was having my second daughter 2 years after I had my first, I had all kinds of plans.  Sleepover parties, sharing prom dresses, make-up and nail polish, fighting over boyfriends and the bathroom mirror.  Then, 2 years later, I was expecting another girl.  The "girlie" plans went into overdrive with all of them being the best of friends and bridesmaids, stealing each others clothes and gossiping late into the night.  I never planned on Autism.  I never thought my youngest child would talk before Katie.  I never thought that my girls wouldn't all go to school together.  I never thought that Katie might not go to the prom, or have a boyfriend, or want to wear make-up.  I never thought........

But that is the tricky game that we play.  I have cried myself to sleep many nights, wishing for the dreams that won't come true.  Sometimes it hits when I least expect it, from seeing someone her age achieveing a milestone that she won't.  Sometimes it is on her birthday, and I think of what she "should be doing" at that age.  Sometimes it is when I see a group of sisters, and they are so close to each other, best friends. 

This feeling isn't the same for everyone who have children with Autism, or any other disability.  Some are very accepting from the beginning, and just plow down whatever path they are given.  I don't see that reaction a lot, however.  I think this whole feeling of "what if" is rather taboo.  People don't want to admit that they feel that way, or think that way.  They don't want to give the impression that they don't love their child, that they don't accept their child unconditionally for who they are.  I was told once by a family member, "I wouldn't change Katie at all, I wouldn't want her any other way."  I completely agree with that.  I love Katie more than I can even describe.  I love her so much that it hurts my heart.  I would not change a thing about her, ever.  I would not trade her in for that little girl I had planned for.  That other girl doesn't exist, and never will.  I love the girl that was given to me and can't imagine life without her.  That being said, I will be honest and admit that those early dreams of mine pop up from time to time.  They make me sad but  I don't want the life that they represent, because it is a life without Katie.  It is a life without all the wonderful people that Autism has brought into my life.  It is a life without wisdom and compassion and experiences that I never knew existed.  I have learned something from every challenge that Katie and Autism have presented, and it has made me a better person. 

At some point we have to realize that those dreams we had for our children are just that, OUR dreams for them.  They are not their dreams for themselves.  Any parent can be disappointed by a path that their child follows, if it is not the path that they had chosen for them.  What if you wanted your son to be a lawyer, and he wants to be an artist?  What if you want your daughter to cheerlead like you did, and she is a star softball player?  It is nice to have hopes and dreams for our children, to imagine what they are going to be like when they grow up, but we have to learn to support them in what they decide is their future, or support them in learning and growing to be the very best that they can be.  On the other hand, you should never give up on your child because you don't think that they can handle something.  Don't sit back and cry over the stars that are your dreams unreachable, lift up your child and help them pick out the stars they want.  You never know, someday our Adventures in Autism just might find Katie being crowned Homecoming Queen.

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