Ethan was beautiful and he did seem perfect. Before his diagnosis, I agreed how perfectly lucky we were. In the rare instance when I felt overwhelmed with the hectic nature of caring for three young children, I thought, "better hands full than heart empty."
But after diagnosis, I struggled. I caught myself asking “why is this so hard? Why am I having such a rough time?” Nothing had changed from the day before: Ethan was still just a baby and, as a baby, he would have been dependent on me even under the best of circumstances.
When I saw him lying next to a healthy one-year-old, though, his condition became immediately apparent. A healthy-one-year-old could sit up, crawl, stand, and maybe even walk. He could hold a toy and play with it. He could gesture and say a few words. Most one year olds can explore their surroundings, feed themselves finger foods, hold a sippy cup, and sleep through the night. They would be on the path to gaining independence in every aspect of their lives.
At age one, though, Ethan couldn’t do any of these things. He lay steadfastly on his back, neither rolling over nor crawling. He needed to be held lest he lie on the floor all day. He couldn't sit up to relieve a burp or change positions at night when he was uncomfortable. He slept in four- to five-hour increments and was often up for two hours at a time at night.
Ethan had a severe startle reflex and jumped at the littlest of sounds—like a fork being placed on the counter top or his own tongue making a clicking sound. He could hold a toy but not for long. He could barely manage to bring a sippy cup to his lips. Solid foods were out of the question because he choked on anything thicker than a puree. He also got sick very easily and had trouble recovering, which was particularly troublesome with two active, germy four-year-olds in the house.
There was still life to him, though. Ethan could move his arms and legs and sit up for short periods if he was held. He could still smile, see, cough, and swallow, though that was fleeting. Our doctors told us to expect big changes in his next six months. I wasn’t ready for that. I loved seeing him laugh and smile and I didn't want that to go away.
My only comfort came from knowing that even though Ethan was not healthy and this awful disease would take many things from us, it could not take away our love for him and his love for us.
Last summer, we celebrated Ethan’s first birthday, in spite of the sorrow. We only had his grandmothers and aunt over for it, instead of the large barbecue with all our friends that we had already started planning for him. His first birthday seemed more like a countdown than a celebration. As it turns out, it was the only birthday we got to share with him.
This June 12th would have been his second birthday. And despite our great sadness and the weight of his unendurable absence, we have to celebrate his birth. We are compelled to celebrate his life. And so it will stay, every twelfth of June, and every other day of the years that we draw breath.
We miss Ethan desperately and we love him endlessly.