Casey & Leita

Casey & Leita, a photo by Suzette ~ desertskyblue ~ Packing & Painting on Flickr.

February 10, 2012

The first assignment this week from my Beyond Layers class was a writing assignment. We were to create a list of things that make us happy. Included in the assignment was an article to read..."On Dying, Mothers, and Fighting for Your Ideas."

I am generally happy person so writing a list of things, which make me happy, was pretty simple:

A husband that I adore

My children

Jared, Sara, and Leita

The morning sunlight as its rays crest the Wasatch Mountains

The long shadows cast, as the setting sun sinks below the horizon in the desert

Knowing for a certainty that I bleed red sand

Fresh faces of grandchildren whose smiles brighten my world

Finding a way to express my vision through photography

My work

My home

My life

I could go on and on as my heart is full but my thoughts are blocked by pure emotion.

What has affected me more than my list of things that bring happiness to me is the article I read.

As I prepare to move to Texas, the thought of leaving the place I've lived most of my life is sobering to say the least and leaving children and grandchildren is going to be nearly impossible, but moving away from Casey and Leita feels as close to abandonment as I can imagine. Casey lives with Sturge-Weber syndrome and is intellectually handicapped.

Reading, "On Dying, Mothers, and Fighting for Your Ideas," has given me another perspective on going to Texas. A 27-year old young man who lives with Spinal Muscular Atrophy wrote about his mother and his life. He tells the story of his young mother being told by a doctor of his diagnosis when just a baby and that before the age of two he would die from pneumonia and that he would not have the strength to fight the disease. She said, "He won't have to...I'll fight it for him."

His mother fought for his life through 16 bouts of pneumonia, she fought for his right to an education, she fought for his place on a basketball team and had rules reinvented to accommodate his limitations, and fought to have a personal aid to help him answer his professor's questions when he could no longer raise his arm. Today, this young man writes a blog encouraging other writers.

Throughout Casey's lifetime, for the most part, I've expected Casey to be as "normal" as possible. As I sat alone in the hospital when the diagnosis of Sturge-Weber syndrome came, I felt the same as the mother in the story. "No...not my son!" In those first few hours and days after we had been given just one short paragraph written about this rare syndrome, my mind went through all the things Casey would never do. Then somewhere along the line it all changed.

I decided he would not be the last child, to protect him from being babied too much, and I began to expect him to do age appropriate things where he could considering his physical and intellectual limitations. Gifts were purchased based on his chronological age and not his developmental age, house rules applied to him as well as his brother and sisters, and he was included in all the family activities, routines and chores. I nagged him to clean his room, to brush his teeth, to bathe, and reminded him over and over that water on your hair is not the same as using shampoo. He was invited to change his clothes many times when he showed up wearing inappropriate clothing.

I fought his battles in school and many times at his place of employment. I travelled I-15  enumerable times, hundreds of times I'd say, so he could have relationships with his peers in Payson, Utah. My entire being, my heart and head, my soul believed in fairness for Casey's life!

I had it all under control until he moved out from under my roof. You see, Casey found and fell in love with Leita Rash. They met in Payson.

Casey moved into his first apartment in July of 2006. He lived there alone before his marriage on July 29, 2006. I still had control of whether he showered or not, wore clean clothes or not, cleaned his apartment or not, and whether he did his laundry or not. The most "normal" yet unexpected thing Casey could do...marry Leita, changed everything.

I was not so naive to believe I'd still have full control, but what I wasn't ready for was the fact that I'd have no control at all after his wedding. All of the time I'd spent trying to keep Casey "presentable" had gone out the window. I had always struggled with his natural untidiness and lack of personal care...because on some level I think, I'd worked diligently to keep him clean and well dressed...to hide the large purple-red birthmark that covers more than half of one side of his face, neck, and chest...I'm ashamed to say.

To this day, I still use different tactics to see that Casey and Leita’s apartment gets a thorough cleaning once in a while, but I've given up on their style of dress. Leita loves Casey and she does the best she knows how to do in preparing meals, keeping a clean

house and doing laundry. They are like any married “normal” couple...they're intent on living their life their way.

So, I have done all I can do, I have gone the extra mile, I have battled the government bureaucracy, I have cushioned his fall, I have battled inequality and prejudice, I have cleaned their apartment, I have sat in the emergency room at all hours of the day and night when his seizures became uncontrolled, I have patiently traversed the roads of Utah in order to help support his relationships and friendships...and now, I need to let him...I need to let them, embrace the most normal life they can have as a married couple.

I will always be available if they need me…Texas is a 2 ½ hour flight away and many of Casey and Leita’s needs can be handled with a phone call. It’s time for me to go…Texas awaits…a new adventure awaits…and as hard as it is for me to say this, what I’ll say now, it’s true…It’s my turn!