On the day Emily was born we had such an array of emotions. Joy at this beautiful little girl. Fear for what her life might hold. Fear of all the unknowns. I remember one of the NICU nurses saying to us "she will do as much or as little as you expect". That clicked with us and we (as I have said often) expect nothing less than the moon and the stars.
I knew no matter what that Emily was going to have a life worth living. So often since we began this journey, we have seen far too many of her peers earn their wings. While the medical field has come a long way in diagnosing problems such as heart defects, the fact is that many of our kids fight the good fight and simply get too tired to continue. While none of us are promised tomorrow, this really resonates within the Ds community.
I do my best to document all the things my kids do, but with Emily, I know it is especially important. I want the world to see that her life is one worth living. Never do I want anyone to pity her or think that somehow her life is somehow less than another.
Emily enjoys every aspect that life has to offer. She loves music. Girlie can shake her money maker with the best of them and her singing is not to be missed. She absolutely loves the water. She is my little beach baby. No fear at all (which scares the hell out of me), she will run ninety to nothing to jump in those waves. Reading is another favorite past time. She can spend hours "reading" her books and when she is done, brings them to me to read to her. Out of all my children, she is the one that loves books as much as I do.
Every day she brings me her swimsuit and says "We go swimming?". She loves the pool and would spend all day there if I allowed it. Socializing is another of her loves. She is very shy around adults, but put her in a room full of kids and she will have every one of them charmed within five minutes.
She giggles, she snuggles, she gives the best kisses and hugs. Her life is without a doubt a life worth living.
Day five...people with Down syndrome live very typical lives and they do indeed have a life worth living. Be aware.
Now tell me, who wouldn't want this life?