Friday, July 3, 2015

The Way it Is / The Way it was Supposed to Be

I have a gorgeous 18 year old daughter, Ella. In a couple months, she'll be 19, the same age I was when I gave birth to her. I was a skinny, quiet, church-going married teenager. She is a more voluptuous brown eyed beauty with a her dad's thick brown locks and talent for math and art. She also has autism. Something I had never heard of when I labored 8 hours in that hospital room believing I was doing the Lord's work. Its been a long and short 19 years. Full of love, fear, joy, confusion and letting go. In a short month, she will go "out on her own". She'll be sharing a house with another girl with autism and she'll have more independence and more of her own life than she has ever had. That's what I keep telling myself. It's what she wants as far as she can communicate with us. She'll be living with the same agency that her brother lives with. For the most part, its been a good experience. Still, It's....well, lets just say if you can't find me I'm in the bathroom crying.

I'm no longer naive, but I do have much different world view than I did when I was carrying her around in a basketball shaped belly miraculously held up by my thin legs. I'm aware that it "shouldn't have been this way". I'm also aware that I should view autism as a "gift" and every viewpoint in between. My daughter is a gift, but her autism is not. I choose not to wallow in it. She doesn't. I choose to live my life and allow her to live hers. I choose to help her find the best life she can. I have a house full of beautiful art that she has created and the sounds of her voice when she gifts it to us. Yes, her life at the new house will be full of caregivers coming and going, and silly goals written up by case managers. Her life will not be perfect. some think I should keep her home forever. Some think I should have done more. I've learned that some are angry when then find out I'm not a crusader for autism. I'm not furious about recent changes in my state that will change the way both my kids receive services: Medicaid Changes in Iowa. I just have no room for anger anymore. Nor do I have room for judgment. Do what you will, cope how you need to. Live life your way.

She's laying on the couch right now with a pillow over her head. Too much stimulation this morning. I was excited about a day together. No work, no day program (for her).  Just time. A precious commodity. I made pancakes that she happily ate and took her bath in the big bathtub with the jets. She let me put her hair in a pony tail, although I was not allowed to brush it. I've learned to take the moments as they come. Ella and I have breakfast together almost every Saturday. Its one of our favorite traditions. The waitresses at our favorite diners know us and our order of coffee with milk and a root beer. They smile at her and look the other way when she takes a few candies from the JDRF box and orders chili cheese fries at 9 am. If a new minutes, when she's ready we're going to go downtown and explore. Its a beautiful day. Just the way things were supposed to be.

No comments:

Post a Comment