Aidpage

Dear Sheila, Thank you so much for taking the time to read my post and thank you for acknowledging us period.  You have no idea how good it feels knowing someone else knows where I am coming from and how I am feeling... Numb is a feeling I have come to know as my friend..

I intend on soaking up every moment I have with Justin... He is my world and I love him so much its undescribeable.  I find myself watching him sleep, smelling his clothes as I pick them up to wash them or while putting them up.  I find that I cling on to any little thing that he shows interest in or likes.. Sometimes its silly things, but to me its everything.. 

I also watch him get worse and when you see your son lose 22 pounds in two weeks or see how pale he is it is more than you can stand.  But  as a mother you suck it all up and somehow find the strength to smile.. You smile to keep him from being scared or worried and you smile to keep from falling apart.  Then when you find yourself alone while everyone is asleep or not around you lose it.. Then you pick yourself up just to start another day and go through the same actions again..  Thats what a day is like for those of us who have to watch or children go through a  disease that is taking their lives.

Unless you have been through it or are going through it youll never truely understand how horrible it is to be losing or lose a child..  So, I thank you so much for sharing your pain with me as well... Know I am always here as well if you need a shoulder... God Love you....  Sherry

**I wanted to share this picture with you of Justin and I, it was taken yesterday on his birthday.

comment to sherryberry-I have been following your posts and felt a need today to tell you how very sorry I am for your situation and for your beautiful boys having to endure this horrible disease. There are no words that will ever ease what your going through right now. I know from my own experience what you know also. There is no human pain worse or words to explain having to watch the love of your life slowly slip away from you. My David was 18 when he finally could not fight anymore but for 4 long years we did fight and fight hard. He would have been 40 years old last oct 1st and there still is not an hour of the day that I don't miss him. The very best advice I can give you is to suck in every moment you have with your son, touch, feel, hug, kiss, play, yell, laugh and cry together and embed every second into your brain. Live for the moment only and full those moments with as much love as you can cram into them. My heart is so heavy for you and my tears are falling from my cheek for you. Please know that you will always have him, always--and you will always have people that care and know your heart. Please feel at ease posting me anytime you just want to unload about anything. Your not alone.   sincerely sheila