I wrote last week about embracing HOPE as my theme for 2009. One of the commentors on that post and one of my favorite bloggers, Michelle Morgan-Coole, at the blog, Free Falling, shared some very honest thoughts about what hope means to her.
She said ,” Sound strange, I know, but I have come to the conclusion that hope is bad for the soul. Just my own personal experience, born from living with the seizure monsters for the past 14 years, when everytime you dare begin to hope they might actually be gone (surely close to two years without or even six months must mean something?) they return with a vengance.”
For me, the opposite is true – hope is the only thing that keeps my soul alive. It would be so easy for me to resign myself to Ashley’s special medical needs. But had I done that when I first adopted her at age 2, her doctor’s predictions probably would have come true.
She wouldn’t be walking and running. She wouldn’t be communicating. She wouldn’t be eating. She would probably not be alive.
Hope was the force that propelled me through endless hours of therapy, doctor visits and hospital stays. Hope became my belief that Ashley was very capable of becoming more than anyone else ever believed she could become. Hope is what keeps me fighting school districts and insurance companies. Hope is the battle won for ESY (Extended School Year) services. Hope is the battle won for an accessible bathroom built at insurance expense.
Hope is what allows me to dream of her future, a future filled with love, marriage, a job, and maybe even children. Hope is the comfort in my heart that says she will be ok even after I am gone.
Continuing to nurture that hope is not easy. Like Michelle said, when the seizures keep coming, even after an extended seizure-free time – when the medical conditions don’t worsen but also don’t get better – when almost everyone we meet treats Ashley as less a being than she is – finding and holding on to hope is a struggle.
But like my cat who continues to run into the same closet day after day even though she keeps getting locked in accidentally, I have to keep believing and searching.