Double digits is a major milestone for every kid.
On April 26, 2006, my wife gave birth to our first child, a daughter we named Lydia Kathleen Allen. It was a welcomed beginning that also marked an end to the most trying period of our lives.
Everyone wants healthy children. “Ten fingers and ten toes,” expecting parents say when they don’t want to answer honestly about which gender they’re secretly hoping for (for the record, I wanted a girl).
But Lydia was born with spina bifida, and needed surgery on her first day of life outside the womb to close an open spinal cord. We were prepared for much worse, because our doctors thought it could be Down syndrome, Trisomy 18, or something similar. The truth was they just didn’t know, which at times was equally terrifying.
We were also told things like “she would never walk, talk, potty train, or see out of her right eye.”
We were told she would probably need a shunt, had a high risk of hydrocephalus, and would never really be “normal.”
After her birth, Lydia was tested and found to have an extremely rare genetic disorder. It is a partial deletion on one of her “x” chromosomes. It’s called, “MIDAS syndrome.”
Lydia does a lot of things differently than most “normal” children. She took longer to learn how to walk than most kids, and still has some issues with her balance and heights (though to be fair, she probably gets her fear of heights from me).
She also occasionally wears a patch on her good eye to strengthen her right eye, and has worn glasses most of her life (purple, of course). She never forgets to tell her eye doctor just how special she is for having orange specks in her retina.
But she also learned how to talk before most kids, and has an extensive vocabulary. She is definitely an extrovert, which has been a chore at times because both of her parents are introverts.
She is curious, persistent, stubborn, and strong-willed.
Lydia loves her sisters! She also loves all babies, dogs, and puppies (the perfect combination). Every time she sees one in public, she insists upon saying hello and wants to know everything about them. She constantly pulls me out of my shell and I love her for that.
She is short for her age and a bit clumsy at times. But she is so beautiful. She has an extraordinary spirit that I worry about wounding every time I have to discipline her. But she is also extremely resilient, and is usually blissfully unaware when people get frustrated with her overbearing personality.
I envy her unwavering loyalty to the people in her life. She believes without hesitation that you will help her with anything she asks, and she is never afraid to do so. I wish I had her bravery. She taught me the ultimate goal in life is not perfection; the purpose of life is to do the best you can with what you have and learn to be content with whatever life gives you.
While she is more than halfway to adulthood, there is still so much I can and want to learn from her. I know someday I will have to let her go, but I’m glad that day is still a few years away.
I want her to see as much of the world as she can. I want her to love, grow old, and enjoy all the best things this world has to offer.
Mostly, I want to see the world through her eyes, orange specks and all.
