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Letter from “Bonus” mom

I wasn’t there when you were born, but you still came into my life… showing me everything that I was missing – (my boy), “Baboy” transpired soon after an inside joke – in your minions phase, and it stuck with us through the years. There is no comparison to the day you made me a “boy mom” for the first time.
I had this automatic feeling of protecting you, with big dreams of what life would be like with you, the jokes, the long walks, and secrets between mother and son. The dreams where I support you next to the sports field, where we argue about school and the company you keep, the day that I have to send you off to college and being scared of losing you, meeting the girl of your dreams and being there on you wedding day, and having some grandbabies trotting around.
There is no comparison to the life we were dealt with, from a small age you were carrying the burden of Duchenne I just came buy a lot later then I should have.
The guilt I feel everyday for not being able to protect you, consumes my soul – but if there is one thing I know is you are my fight, you are the reason for the START of QJDMD, Even if I lose you to this disease, it will never be for nothing, and you will be the reason so many other mommies have their dreams come true with their own little boys.
Thank you for fighting Duchenne everyday and still having time to love me with all your heart. You are a sunshine to many. May our journey encourage, motivate and inspire the road to a cure.

Love “Bonus” Mom