Dressed up and happy!

March 2011 hospital

Happy, even when in hospital

To everything there is a season, and a time to every purpose under the heaven: a time to be born, and a time to die; a time to plant. And a time to pluck up that which is planted; a time to weep, and a time to laugh; a time to mourn, and a time to dance;

 Today we weep and mourn because Elizabeth is gone. We knew that she was losing her battle with her health, but the reality is still a shock.  She is our beautiful princess and in many ways our lives have revolved around hers. An artist/ calligrapher friend

who visited recently left me a piece of her work that said “you are the bird of my heart”. And that was Elizabeth, the bird of our heart, small and delicate with beautiful music and a soaring spirit.

Elizabeth did not gift us with clever conversation or cute remarks. But she did gift us with humor. She teased us often in her own silent way. When playing ball with us, she would act like she was going to throw the ball to one person and then throw it the opposite way. This action was followed by laughter as we ran for the ball.  The first time I put a crayon in Elizabeth’s hand and gave her some paper to draw on, she looked me straight  in the eye, reached over and drew on the wall. And then she laughed aloud.

In her brother's sunglasses.

In her brother’s sunglasses.

She did not get a college degree or find a career that we could brag about to our peers. But what she gave us is far more valuable. She gave us the opportunity to discover the depths of our character, to know deep love and our commitment to someone we loved. We learned patience and new abilities that we never dreamed about having.  In trying to care for her and keep her safe and well, we were driven further than we ever could have imagined.  We learned more than we ever wanted to know about medicines, seizures, broken bones and other medical conditions. And we learned the fine art of patience and careful communication in order to keep her well and safe in various medical facilities.  I’ve Learned to be an advocate for her standing up to many world renowned medical professionals if I thought they weren’t getting what I was trying to tell them about our daughter..

And while I might complain of a back ache or headache, I was always aware that whatever pains I have endured, hers has been far greater, and she got through it, usually without tears and without being able to tell anyone about how bad it was, or even to ask for something to relieve her pain.   One of the pictures of her in the slide show, shows her in a full body cast with a big grin on her face. I am not sure that I could smile under those same circumstances.

While, some disabled people may say that the world does not notice them, Elizabeth was not about to put up with that.  She’d stare at someone with her big brown eyes and once they finally noticed her, she would gift them with her lively smile. She made friends wherever she went, whether it was to the mall or the hospital or anywhere else we took her.

You probably can’t see them but today she is dressed in hot pink Jeans.  It was tough buying her last outfit, but these Jeans caught my eye when I first walked into the store and I knew they would have caught her eye. When shopping, she would often pull things off the rack that were in her favorite color and hug them and smile sweetly. We had to watch her carefully, there were a few episodes where we had to return items to the store that we did not notice her carrying. until we had left the store.

When being accessed for IQ level, she was rarely cooperative, refusing to point to pictures or objects, but when it came time to pick the color for her first wheelchair, her finger was quick to point to the pink sample on the board!

Elizabeth is our teacher. If we judge her by the world’s measuring stick, she was less than she “should have been” She didn’t know about math or reading or paying for something in the store.   But she took infinite joy in her life, simple as it was. And I think that that is a lesson that we can learn from her. She gives us the gift of appreciating the simplicity of life. People often feel pity for the disabled and their families. But that is because they do not understand the richness and beauty that these beautiful souls bring to our lives.

She has certainly  taught us what is really important in life. She gave us and taught us about unconditional love. She gifted us with her innocent trust, And she taught us about maintaining an independence of spirit, even while being physically dependent on others to meet even the most basic of needs.  Her strength pulled her through illness after illness and she lived far beyond her expected life span. Through her I have learned how precious life is and to not take it for granted. She reached for me time and time again on Friday as she struggled so hard to breathe, and I knew that she was reaching to hold my hand,  to comfort me as well as herself.

And as sick as she was when I arrived very late Thursday night there was a fleeting smile on her face and an effort to open her eyes, when she heard my voice. I was so glad that she knew I was there! Later when I relayed a message of love from John, her eyes opened wide, met mine briefly and again the fleeting smile.

Once, years ago, we put Elizabeth down in the sand at the beach in Gulf Shores, Alabama. In the blink of an eye, as fast as her little hands and knees could carry her, she took off crawling toward the ocean, head first.  She wanted that experience of the beautiful roaring waves of life. Let us, who knew her and loved her, take off for our future in the same joyful way, carrying with us our wonderful memories of her beautiful innocence and knowing that her loving spirit will always  be watching over us.

On Children
Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.