Hope begins in the dark; the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.-Anne Lamott
I’ve been told on more than one occasion that I am strong. The first time I recall hearing those words was from a PICU intensivist. It was the same doctor who tried to convince me that I should let them trach Jack at the same time he went under anesthesia for a muscle biopsy. I told him that I wasn’t going to agree to trach Jack until I knew why. The day Jack was trached, he came up to me and told me I was “a very strong person”. I’ve been told that I am strong by people who are on the outside looking in - those who only see or imagine what caring for Jack involves. I’ve also been told I am strong by my fellow sorority sisters – women who face the same hardships and struggles as I, and who know what caring for a child like Jack involves. Strength is in the eye of the beholder. To most, I suppose I appear strong because I am living a life they can’t even begin to imagine themselves living. The operative word being …. living - as in functioning, participating, and even enjoying on occasion. To those who live the life, I’m not sure how they see me as any stronger than themselves. Perhaps it’s because I’ve been doing this longer than they have and I still (purportedly) have my sanity.
I certainly don’t feel strong. Mostly, I feel tired. There are times I feel angry and times I feel sad. But, for the most part I feel confident, I feel a purpose and, above all else, I feel determined. I am determined to find a way to live the life I want – the life I planned – as best I can under the circumstances. Admittedly, not an easy endeavor given the overwhelming emotional, physical and financial stresses that come with having a medically fragile child. Yet, I get up each day determined to give it my best shot, determined to “keep on keeping on”. Some days I am more successful than others. But, no matter what -- I refuse to "give" because I am determined to do it my way.
Does that make me strong? No, I am not strong . . . I am simply stubborn.