One of my mom friends, Bridget, who also has a child on a medically complex journey posted a song on Facebook with the words, "Might seem strange, but sometimes a romantic song can actually change its meaning when you have a child", she went on to say "If you're a mommy of a non-verbal child; this one's for you." For the past couple of weeks, our house has been slightly obsessed with listening to "The Greatest Showman" songs on Spotify, on the house Alexa, on YouTube, literally, anywhere we can get the songs playing. I love all the songs on the soundtrack, however, "Rewrite the Stars" is the one that if you pull up next to me driving, you can bet money I will be belting out the words as loud and off-key as possible with tears in my eyes or rolling down my face.
It seems to be the perfect duet with Sonzee these days. Almost every single phrase I can relate to her life and our situation. From the heartbreaking reality that "Fate is pulling you miles away And out of reach from me", But you're here in my heart". To the literal facts that I am sure she feels, "You think it's easy You think I don't want to run to you But there are mountains And there are doors that we can't walk through". Which leads me to the basic question, "How do we rewrite the stars?"
Oh gosh, if only we could, if only it actually was possible. No matter how many times I listen to the song the words crawl inside my heart and just sit there. These last few weeks have been ridiculously brutal on Sonzee, on Sam and me, on our marriage and general family life. The situation we are placed in is not normal and shouldn't even be considered normal in our special needs, medically complex, "atypical" world. Decisions have been made, choices have been made, but there is no winner. There is no winning in this lottery.
"No one can rewrite the stars", but "Say that the world can be ours". "Say that it is possible, because "It feels impossible...We're bound to break and my hands are tied".