Almost 14, she is

As Sarah's birthday rolls into view, I remember. I remember the delight of such a sweet little one. I remember presenting her to her two brothers, physically handing them their baby. I remember their excitement, their softness with her. Their love.

Love. Because that's what it's all about.

All. About.




And for the next few months we got to know our girl and she became permanently cemented into our hearts. Jimmy was 12 and so proud to help me make bottles, change diapers and put her down for naps. John was 8 and he specialized in entertaining Sarah. He was her buddy. She had special smiles for John.




And then we realized she was not developing like other babies her age. Jimmy came home from a friend's house one day, and he was concerned. "Mom, Matt's little sister is Sarah's age and she can sit up, why can't Sarah?" We had the formal developmental evaluations, blood tests and neurological visits. And from beginning to end no one found any answers or had any predictions. She was given various diagnoses for insurance purposes, but none of them explained the big picture.

I remember driving down the street with Sarah in her carseat in the back. I could see her in the rear mirror. I remember looking at this lovely 2 year old, with long blond banana curls, round blue eyes and pink cheeks. She was humming to herself, smiling and eagerly looking out the window. She was so, so very dear. So content, so sweet. So vulnerable. She had no speech, could not crawl or walk, entirely dependent on us in every way.





I remember staring at the road ahead, thinking "My little girl has epilepsy, cerebral palsy and autism...all rolled into one" And for a moment I panicked. After all, those were very dark, scary, ominous words. All jammed into one little person. They were words I didn't know enough about yet, but still they were words that frightened me nonetheless. Words of doom.

And then I looked back at her once again and saw the child we loved so very, very much. A happy child. A sunny child. A child who portrayed none of the darkness. It seemed entirely irrelevant to her. And suddenly, those words didn't seem so important anymore. Because in spite of them, Sarah shined. Shined brightly and strongly. Her little lioness self. Bringing such joy.





And that was the turning point for me. From there on out, I didn't care what 'they' called 'it', my focus was on Sarah and she was awesome. Words meant nothing, Sarah meant everything.




Because, in the end, what is it really all about? What you can do and can't do? What words you are able to speak? What you buy? Where you live? What you own? Nope. It's about feelings. It's about giving and sharing. It's about being present and living.

And loving.

That's what it's all about.