''It is the simple things I treasure most about my daughter.

The hugs that I know one day she won’t be able to give anymore.

The time when she was eight — the only time — that she said my name: “Mom.”

The confirmation from a nurse that her heart rate actually slowed as a result of me holding her close during one of our numerous hospital visits. It is the closest thing to “I love you” that I will ever receive.

My daughter’s name is Emily and she has Trisomy 21, an extra chromosome that causes Down syndrome.

Combined with a separate, underlying neurological condition, it means our lives have often been challenging.

Emily does not talk, walk or feed herself, and suffers from epilepsy, severe sleep apnea, low bone density and muscle tone, and hearing loss.

She has endured numerous surgeries and thousands of doctor visits — so many that her medical files can not be contained on a single cart. And there are many more to come.

But these are not the things that define her. She defines herself by the friends she surrounds herself with, by living life to the fullest and sharing the beauty she sees everyday with others.

She teaches me patience, and I am always amazed how a child that can not communicate with words can portray herself as sassy and strong, with a wicked sense of humour.

She is not different, any more so than every child is unique in their own way. My child has the same feelings, the same hurts, the same pains, the same desires and happiness. She can be as frustrating and stubborn as any teenager, but her boundless love has always made every struggle worthwhile.

And I don’t consider our lives remarkable. Our normal is what we live with every day, just as every family has their own version of normal.

Like any parent, I committed to celebrating her triumphs and sharing in her battles. As I wage a near-constant fight for equality and fairness for my daughter, I ask for nothing more than the opportunity for her to enjoy the same opportunities as any other child — a good education, access to social and physical activities, and simple acceptance as the person she is.

She is just Emily — a teenager, a sister, a daughter, a friend and an amazing girl.''


Source: Calgary Herald