Hanging in there...

People ask how am I doing, and I tell them “hanging in there,” because there is no really good answer. Good is a lie and bad is only a half truth. “Hanging in there” is a good general answer that indicates that I could be better and I certainly could be worse. I know that my Sam could be better, but I also am fully aware that he could be much worse. I am hanging in there because I must. I cry when I feel like crying, I laugh when I feel like laughing, and I sit numbly much of the time when the quiet hits at the end of each day.

When Sam is having a good day, I am having a great day watching him move and do, eat and laugh. When Sam is having a bad day, internally I am devouring my insides as I try to reason with an angry, depressed six-and-a-half-year-old who is screaming “I want to go home!” I do my best not to allow his lows to kill me as he twists his verbal blades with his completely irrational, angry rants of his desire to be someplace he just can’t be. 

I am hanging in there because I know at some point this all ends even if Sam cannot see the light at the end of a very long tunnel. I am hanging in there because I have such an incredible support network of family, friends, colleagues and congregants who all fit into one or both categories of family and friends. I couldn't do any of this without you. Even with all the mail coming to him, Sam cannot fathom all the love and support truly pouring forth into his life. But I can. I understand the true global numbers of all the love, prayers and support that help my wife and I each day. So my "hanging in there" is purely the result of all the helping hands, caring thoughts, warm meals and meaningful words that have been pouring in as everyone found out what we are going through. This is a long road, and we are grateful for your support along the journey.

My wish would be that all families had a support network as large as ours so that infinite love poured in whenever needed...

With infinite love and gratitude, know that I can only do this because of the strength you give me when I need it most.