The Day My World Was Turned Upside Down

I was so full of hope for 2013 after what had been the worst year ever. Until Friday, January 4th when I heard something that would forever change our lives; my 12 year old son had been diagnosed with Duchenne Muscular Dystrophy. When I heard the neurologist give the diagnosis I vaguely understood what he was handing me, a disease that would eventually cripple my son as his muscles slowly weakened. But what I read later absolutely stopped my heart and I thought I was going to die. I learned this form of MD would very quickly rob my son of his ability to walk but would also rob him of life. 100% mortality and most by the age of 25...WHAT!!!! How could I now be faced with the reality that my beautiful boy would not grow up to go to college, get married and have a family of his own??? I prayed so hard the Lord would inflict this disease upon me and give him his life back.

I have spent the last couple days trying to act like everything is normal while trying to learn everything I can about the disease, trying to somehow find some miracle drug or procedure that would grant him his life back.  When ever I am alone I grieve...I cannot control this emotion of loss. All I can picture is that little boy who I love so much slowly withering away before my eyes. I feel helpless and hopeless.

I keep hearing what I feel is normal and soon it will get easier and eventually I will fall into a "new normal". I don't want a new normal....I want the old normal!! I feel so alone because I want to scream and cry and break things....but I can't. I have to control my emotions and watch what I say and do as to not affect the other members of the household. But I am consumed with what waits...what challenges we will face tomorrow and the day after as well as the challenges that will face me over the coming years.

I know we will get through this, I know that we will eventually come to accept this new life and the new challenges. I have no doubt that I will be by his side every step of the way and will love and support him so that he will not need to worry or fear anything. But...eventually seems so far away. All I can think of now, if how the hell will I live without my son. How will I ever again feel whole...How could a child be stricken with this disease...How can I fix it, heal him, find a cure???

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Comment by Mary on January 8, 2013 at 9:04am
I feel your pain & heart ache! It's been 3 months since my 5yo was diagnosed, and I feel as though I'm abt to loose my mind! My heart & my life have been torn to shreds! It consumes your every day thought, life will never be the same! Accepting is hard, but you will learn to take one step at a time! Live for today bcz we don't know what tomorrow holds. Sending you lots of hugs! Xxxxxxx
Comment by Donna on January 7, 2013 at 2:17pm

I'm guessing every parent on this site could have written exactly what you just did.  I know I could have.  Welcome to this site.

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