2013

Sarah has lived to 2013. She was born in 1996. My life changed that year, even though I didn't know it at the time. It changed precisely on August 15 at 4:07 am, even though I thought I was just having my 3rd baby. Just my third, that's all. No big deal. Oh yeah. Even as we were discharged home, seemingly healthy baby and mama, it seemed very, very routine.

Sarah will turn 17 years old this summer. Seventeen years. For 17 years , I have cared for her, keeping her healthy, happy and protected from the many parts of life she finds stressful. Helping her to thrive. Doing every single thing for her except help her breathe. Well, OK, she can roll over and reach for things.


Anyway, if I knew, when Sarah was born, what the next 17 years would entail, I still would have been entirely on board. Because at the end of it, she is still here. I have been successful in giving her the life that she needs.  She is still smiling and happy. She still thinks life is good. She remains basically hospitalization free. Is this because of my marvelous, meticulous, preventive caregiving skills (ha!) or is it because the nature of her issues are relatively stable? I will never know.

Because she has no diagnosis, there is no yardstick. No predictor of a lifespan. I know nothing. The doctors know nothing. We just keep going. Into the future. If I was a betting person, I would wager that at the end of the next 17 years, Sarah will not be here. I could be wrong, I would be ecstatic to be wrong. But I don't think I am. I just don't think she can keep this up for that long. She works hard every day to move, communicate and stay healthy. I'm helping her the best I can.

So, I celebrate 2013 and am so grateful to bring Sarah with me into this new year.

Sarah's little Christmas tree :)

Sarah's treasured doll, Emily.

She sleeps.