I believe in vulnerability. I do not believe we can keep ourselves safe from every terrible thing we can imagine. I believe that once we accept this, we turn that vulnerability into strength, and even into a way to experience joy.
At two months old, my sister’s first child was diagnosed with a rare and terminal genetic disorder. An infant is already so fragile. Addie was much more so. My family spent the next year and a half watching Spinal Muscular Atrophy wither Addie’s body. She could barely hold her head up or move her arms or legs. She lost the ability to swallow, and had to have a feeding tube put in. My sister’s and her husband’s house became filled with all types of machines, oxygen tanks, and round-the-clock nurses. But we knew despite everyone’s best efforts, eventually her lungs would fail. Despite all this, Addie each day was intent on learning and experiencing every new thing she could.
When Addie was first diagnosed I could think of her only as sick. Then one day, Addie sat in her little chair, looking at a mirror propped above her. She was cooing at her reflection. As my sister and I watched Addie watch herself, it became clear she thought she was perfect. I knew then that I had been wrong—Addie was ill, but not lacking. She never doubted that she was everything she was supposed to be, and because of this, she was so much more.
Some people say everything happens for a reason. But I believe we give reason to everything that happens. We have the choice to either accept or avoid the hard parts of life. Vulnerability is not the same as weakness. It’s acceptance. When we accept the things in this world we cannot control and decide to love the world anyway, that vulnerability turns into the strength of love.
Addie always concentrated intently on every experience, reading, drawing, swimming, or running her hands through pine needles. She could barely move, but her eyes would bend to the side and she would smile as she mentally recorded every sensation. This was Addie in the world. This was her knowing that we can’t bend the world to our will, but once we accept this, we have more time and energy to love freely what we will.
When Addie died this past Christmas, at the age of twenty months, it was hard for my family to imagine going back into the world. Our own victimhood of genetic mischance seemed overwhelming. But Addie never had a choice but to accept her weakness. This left her free to practice her love—the love that is for little daily moments. When we stop pretending we can protect ourselves from everything, these are the moments that can open up to us.
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