Katherine's new friend from soccer has a big sister who suffers from San Filippo Syndrome. It's incurable. . . and progressive. . . and fatal.
On Sunday, Mike took Katherine to help her friend sell lemonade to raise money for San Filippo research. I stayed home and read about the syndrome online and cried.
Because I know what it's like to lose a child.
Because it's almost that time.
The 24 days each summer that are really hard for me.
On June 22, it will be twelve years since my daughter, Sarah, was born, and on July 15, it will be twelve years since she died. She only lived 24 days.
Every year I remember.
Every year I'm sad.
Whenever we lose someone we love, certain special days are harder than others. Birthdays. Anniversaries. I think it's a normal part of grief.
Sarah's little life was so short that the whole 24 days is like one event to me.
It's gotten better over time -- a lot better. It's not debilitating. Last year, one of the days -- I don't remember if it was the anniversary of her birth or the anniversary of her death -- passed before I knew it. I literally forgot to be sad that day. A few days later I realized my mistake and had to smile. A lot of healing has happened in my heart.
But still, I get a little nervous each year, anticipating those 24 days.
As they approach, I get uneasy.
That's just where I am, 12 years after the fact.
And I think that's OK.
Sharing today at Emily's blog.