Emotions are a funny thing. Sometimes all it takes is a taste or smell to bring back a memory. And suddenly it’s like you’re there again, reliving every moment.
After my son was diagnosed with Duchenne Muscular Dystrophy last year, my world view went within a few seconds from being positive and rosy to realizing just how infinitely cruel life could be. I went through the opposite process I had gone through when I had fallen in love as my heart broke into pieces so tiny I don’t know if I’ll ever be done picking them all up again. Songs began to make sense, and listening to them would hurt so much I would be left in tears.
In the immediate months after Hermes was diagnosed, there were two songs I couldn’t bring myself to listen to. The first was a Greek song, called Pio Psila (Higher). Listening to it, you wouldn’t think there was anything offensive about it. It’s an upbeat song about two young people falling in love. But this is the song I listened to on a loop with my son, trying to get him to nap just before we ended up in hospital.
When we came out and had a new world to face, it was almost a year before I could listen to it without feeling like I’d been stabbed in the heart. The reason was these lyrics:
The world around us is now changing
I’m not afraid, it doesn’t scare me
I won’t waste a single second
Whatever you want, I will do it for you
Our only enemy is time
In your arms, the pain goes away
Don’t leave me, hold me, embrace me, love me
The world around me had changed. And I was terrified. I ran around like a headless chicken trying to find anything, any shred of hope, any piece of wildcard research, something to get me out of bed every morning when all I could think was “100% fatal.”
But the line that killed me was that time is our only enemy, because it’s so true. We are happy, in our day to day lives we almost forget that somewhere a clock is ticking and it’s ticking against us. I so often look at my son and wish I could freeze time to now, that he would never get older than 2 years old, that he would always stay small enough for me to carry anywhere so that he wouldn’t feel his disability manifest, and that I could spare him the deterioration I know is coming.
The second song was People Help the People by Birdy. I always thought it was a beautiful song and once again I used to play it to my son trying to get him fall asleep. Even now, I can barely listen to it:
God knows what is hiding in those weak and sunken eyes
Fiery thrones of muted angels
Giving love but getting nothing back
People help the people
And if you’re homesick, give me your hand and I’ll hold it
I would wonder as I was stuck in traffic – how many of these cars contain parents who have lost a child? How many people did I walk past today who have a child that’s suffering? Are we the heroes? I’m told so often how brave I am but I don’t feel it. I’m just a mother that gets up every morning and tries to keep her family’s life rolling as best as she can, hoping for the best and planning for the worst. Is it brave when you are learning to live with the fear of the future, like a constant dull pain?
And yes, I am terribly homesick for a place that I know I can’t ever go back to. So homesick that I cry from frustration thinking about the alternative path I should have been walking, in a perfect world with a healthy child and such a simple future to plan.
But it’s the help of friends and family, the other people that helped me that gets me through. We can’t ever go back, but we can go forward, and maybe what’s around the corner won’t be as terrifying as the monster I imagine in my head. They have held my hand as I’ve cried and emerged from the shadows with their own stories to give me courage. I think, in the end, they are the heroes because every day, they save me.
God bless you and your handsome son. I am soon to be father of a son and reading your article brought me to tears. Indeed, we cannot go back, we can only go forward. We must go forward, for the sake of our children, and for the sake of other parents who may find themselves on similar path.
god bless you and your handsome son. my prayers and best wishes are with you. indeed, there is no going back, only going forward, for the sake of your son and for the sake of other parents who may find themselves on a similar path.
sorry for the duplicate comment. i didnt see the first response posted. take care
May you be blessed with strength to help you as you care for your beautiful son.