Today my arm muscles ache, my blood sugar is higher than it should be, my feet hurt, and my heart is overflowing with happiness. Why?
Because my dear niece got married on Saturday night. She is my daughter’s life long friend, so when she asked her aunties to make forty pies for the wedding reception, I responded the only way an auntie can. “Yes,” I said without hesitation, knowing full well that between rolling out pie crusts, sampling the wares, crying as she walked down the aisle, handing out pie at the reception, and boogieing at the dance, the Monday after would be a severe day of reckoning. Even so, I chose to say yes, grateful to be part of her day of celebration and happiness, and thankful for the tiredness of today.
Far too often, while caring for a baby with special needs, my husband and I felt like our ability to make choices for our child had been ripped away.
We didn’t choose to have a son who needed surgery at birth.
We had to choose to send our baby to a hospital 750 miles away or to let him die.
We were too far from the hospital to choose the surgeon who would operate on our newborn.
We were 2 decades too early to choose family-centered care for his many hospital stays.
We were often too sleep-deprived and despairing to choose hope over despair.
During the first few years of our baby’s life, we sometimes felt like the choices that should have been ours as parents had been hijacked by a distant God who couldn’t possibly love our son as much as we did.