Dear Duchenne Moms,
You’ll have to be much stronger than you already are. If no one should tell you, everything is not going to be okay. Nothing gets easier, while life remains merciless. I know it well, having to face this disease for such a long time. I may be at the end of the road, but continue on because some things are necessary. There was never an option to begin with.
The cold, hard truth is that you already know that it wasn’t your fault. However, you still blame yourself for giving your child Muscular Dystrophy because you think guilt gives you greater motivation to love your son the way he deserves. Darling, please always keep in mind that hurting yourself is also hurting us, and we would rather face more hardships than to see the silent despair in your eyes.
Mommy, you and me, we’ve been warring this battle for centuries. I know it in my heart when I see you fighting under seemingly impossible circumstances. It’s just, the future is even tougher. You must withstand coming to terms with things that human beings weren’t meant to come to terms with. There will be many tears.
I remember when things got bad, I couldn’t breathe through all the numbness. You were there to hold my hand, and yet despite being in your sweet comfort, I was by myself. I closed my eyes and then you were finally with me. This is life, Mom. Everyone is alone at the end of the day. We are simply alone together.
My dearest mother, through your unconditional love, you’ve shown that adversity is not something we overcome. Instead, it’s a fire we must walk through. This is me returning from time to remind you that you already won.
And you will lose me, eventually. I promise. Though, on that day, I will run free. I hope you know how grateful I am for your genuine love, for in your presence, I was always unafraid, unaffected, and unmoved. You were never my world, but my heaven, my love, my conscience…
So from tonight and onwards, I want you to be free, from the worries, feelings of guilt, and all the bitterness that existence has consumed us with. I hope your afternoons are filled with orange marmalade skies. I hope you surrender to the sunrays that kiss your face when you run your fingers along the walls of an empty hallway. I hope you know how much you’re loved, no matter where I am, watching over you for eternity.
Your Duchenne Boy