Thursday, April 10, 2014

Where to begin, but I will always THANK GOD FOR MY MIRACLE

I need to do this, yet my brain heart and soul is like a volcano constantly erupting.  During my last post in 2012 it talks about loss and basic issues of relationship problems that we were going through, last summer my doctor said due to my right hand that I fell on in the summer of 2011, we needed to rule out HD (my mom's illness) before I could even consider filing for disability, the fact alone that I had to consider it was a hard one, that alone with marital issues and still loving and smiling and hugging my son when he gets off the bus each day, still balancing my family in PA driving into make that balance.  In December my face briefly started to feel funny around my mouth area when I talk.  The appt with the neurologist at Mass General was booking three months ahead and so with that knowledge stressful yet never ever believing it was HD,  The appt in January was basically with the neurologist, who saw signs and ordered the blood test right then, and we waited until March 19th for the results.  In January E admitted he had seen signs to the doctor yet only during an argument with me a year prior did this come out, but he was taking notes of my symptoms that he said were for the doctor.  As soon as we heard he believed I had it, and ordered the blood test, both of our worlds collided and we held hands so tight we hadn't held like that ever........the tightness of no, silently screaming, our son would be at risk if this was positive, our son who just in late 90's this same place said you aren't showing signs now live your life, don't be tested Live!  We at the time went through IVF this was a year before embryo testing was available, and at the time we were so full of love and life and dreams and our son or daughter would find the cure, and our child by then there will be a cure, I still don't regret My son, he is my blood in my veins and my heart beat reason for breathing every memory over the past twelve years is still in a big lump in my throat now......  We got the positive results back now three weeks ago, and I have still can not fathom this is real for me, the mom who loves her son so much for the life of dreams we created and love.   I still can't verbalize it to my family over the phone even, other than that first day, that 300 miles is killing me now but everyday with M is all I can think about.  My speech is slurred, I am 12 years into this already through the neurological part two years into the physical, which brings us back to the last post,  I have a small gait and my hand is horrible so one breath at a time...  For someone who loves her family so much I wouldn't wish this pain on anyone and share just to have other's use this maybe to know the reality, not for pity, but for continued love to those I loved and love my son the most and to just be there for him he is now at the preteen age and I just want my son's happiness health and a CURE........

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