Thursday, March 15, 2012

Often times I am totally worn down, I am tired, and I also feel like I am juggling, no, more like tightrope walking, or maybe fire dancing or perhaps riding a motorcycle in a cage with my husband on the other bike while the kids are standing in the middle.  Something that takes effort, concentration, planning, but also has enjoyment and thrill.  Something that  could go horribly wrong at any second.

That is how I feel preparing to go to the store with my kids, especially if I have more than one place to go.  How  I feel when we are going to have kids come to our house to play, or a dreaded, but also happily anticipated Birthday party invitation.  The worst is when it isn't planned, like if I am picking the kids up from school and realize I must stop and buy X ingredient for dinner or we have nothing to eat.  The fire dance begins and I have to pray I don't miss a move, and that I set everything up as best as I could for success.
It's all a fire dance and on a lot of days it goes just fine, but when it doesn't...LOOKOUT!

When it does go fine though, people on the outside don't realize all the preparation that has been done.  Like watching a circus, it looks so easy, effortless even. I am feeling a bit silly this week though, because I do work hard to produce smooth days and then I will get a compliment about how kind and sweet my daughter is.  Now, this feels good to hear, great even! But something inside me is screaming YOU HAVE NO IDEA!!! or "That is because we went over a list of rules and practiced a script before we came to this party and we will be leaving the moment things turn sour, but before you notice." 
Of course, I don't say these things.  I say "Thank you." Because I know that these people mean well, and really do truly think my daughter is wonderful, and because they are right.  She is sweet, and kind, she is amazing.  I think it's human nature to want recognition for the things that we do.  If we clean the kitchen we want somebody to notice how sparkly it is.  If we prepare a big meal that took 4 hours to make, we want people to know how long we worked. 
I have read about parents of children with Aspergers saying that they almost wish there child had a wheelchair so that everyone would know how hard they are working.  Because a wheelchair, or other physical disability is obvious, it's in your face, people know you are challenged daily.  They might even ask how they can help you, bring a meal over, or pray for you.   Personally, I haven't wished my daughter had a more obvious challenge, I do see where they are coming from though.   I have a friend who's son is the same age as my daughter.  He has been fighting for his life for nine years, he cannot talk, and he is in a wheelchair. My friend  has been fighting right with him.  When I think about my friend and her son I feel totally stupid and petty for my desire for people to know I am tired and working hard.  How blessed I am that my daughter can talk, and walk and how dare I feel this way.  Yet, these feelings still come up, and I will keep trying to push them away,