I have a vivid memory of rocking my son back to sleep in the middle of the night shortly after he was born. It was dark and quiet except for the soft lullaby music that was playing.
I was imagining everything we would do once his twin brother was home from the hospital with us. I thought about them going to kindergarten hand-in-hand, playing on the same soccer team and having the same group of friends.
The CD seamlessly began playing the next song, Canon in D — the wedding song. For some unexplained reason, tears started streaming down my face as I pictured the tiny son in my arms as a handsome and strapping young man waiting at the alter for his bride.
I had just brought my son home from the hospital, and I was already planning his wedding.
Fast forward five and a half years. I had just learned that my sweet, vivacious son would die. He had a tumor growing in his brain, and there was nothing that could be done about it.
Suddenly kindergarten and soccer games and friends and being besties with his twin brother weren't guaranteed anymore. He would never make it to his wedding.
So rather than planning all the things I thought would take place in my son's life, I planned a funeral in my head for thirteen months.
I planned a funeral because that was the only thing in my son's life that was guaranteed. And playing that funeral over and over in my head ultimately helped get me through it.
Instead of looking ahead and planning every aspect of his life, I became present in the moments I had left with him. I would lay outside with him on a blanket and watch the leaves sway in the trees. I laughed with him at his chemotherapy appointments as he balanced stuffed animals on his head. I soaked in every joke he told, every smile, every weak laugh. I studied his long curly eyelashes and his big block feet and imprinted the softness of his cheeks in my mind.
Those were the only moments I knew I would have with him, so I stopped looking ahead to other ones and stayed present in those.
The reality of having a child with a life-threatening illness is that you learn that nothing in life is guaranteed. You can have hopes and dreams for the future, but the reality is that none of us knows what's going to happen when we wake up tomorrow.