Tonight was one of those nights, where you laid down on top of me, and cuddled with me for no reason.  Maybe it was because I was unusually tired, and the only thing I could accomplish tonight was to lay on the couch, and actually watch a movie with Hannah and Jason.  A very unusual thing indeed, as I’m usually milling around, doing dishes or laundry or picking things up.  Tonight, I was just SOOOO tired.  That is, until now.  Where it’s midnight and we finally went to bed beforehand, and now I can’t sleep.  Maybe it’s because I have some words I need to get out.  On to paper.  Or this computer at least.  Maybe it’s because I’m more emotionally tired, and not physically.  And why I can’t shut my brain and my breath off enough to fall into slumber at this late hour.  Nevertheless…… it was Glorious.  As you laid the length of your body against mine, and rested your sweet head on my legs.  I melted into you.  I held you.  Not so tight that it might bother you and you would get up, but tight enough to let you know, I was SO glad you were there.  You see, every chance I get these days, I’m holding you.  Kissing you.  Cherishing your soft skin. Your small hands, your legs like your dads.  You see, I have this sense, that it won’t be too much longer, that I can hold you in the warmth of your flesh.  I have this overwhelming sense, that your bodily time on earth is coming to an end.  So there.  I’ve said it.  I’ve written it.  I’ve felt it. Really, in the opposite order of that.  I’ve said it outloud a few times lately, but somehow, it feels good to say it outloud, onto this paper, onto this computer keyboard.  Some might call that sad, or morbid, or even lacking in faith.  But I’m so far beyond that criticism.  I’m trying to prepare my heart and body for what inevitably will be.  Your body, is so frail. I’m so thankful for these beautiful photos.  These photos that show your gorgeous eyes, and for once in a long time your nose not all bloodied up.  Your seizures have been so severe lately.  So severe and so often that we needed to up Meds.  Upping the meds seem to have made the seizures shorter, and more often.  Like adding meds just break up one drop into 5 little drops. But at least they are not sending you crashing onto your face.  Only your knees, and your hands.  Your hand is bruised now, and we don’t know when or how it happened.  But we notice you using it less, and then the bruise come through.  You are also feeling sick. Twice in the last few weeks you have thrown up everything inside of you.  And then were fine later in the day.  And there is nothing we can do.  We can’t take you the Dr. We can’t have your blood drawn or your urine tested, you won’t allow it.  You won’t let them touch you.  I don’t blame you.  They have hurt you rather then helped, your whole life. Many have tried, many did care, but their ways and methods only hurt you more.  It’s not fair.  So, not fair.  And so, with my broken heart, I work to change my focus.  On loving, and appreciating every second you are still here with us.  When I help you step into your diaper, I kiss your legs.  I love and relish in how much like your daddies they are, but in lacking muscle and tone.  Decimated by over half of your life on heavy duty meds, and a disabled condition.  When I catch your eye, I try to remember to smile, so you can see how much joy you bring me.  Even though there is so much sadness behind that smile.  I want you to see the smile, before the tears.  I don’t want to look back and think, I should have kissed you more, and cried less tears. There will be a lifetime of tears to cry.  I will be sad when you are gone.  I imagine we will all go through a serious identity crisis, not even knowing how to live and be a family without you in it.  But we will survive.  Because we are strong in love, in spirit, and in faith.  And I hope, I will be able to focus on the good.  I will imagine you healthy and whole, and free of pain and seizures.  In heaven, waiting for the day we will join you and rejoice. As a culture, we have spent this last year, not living life, in fear of losing it.  And maybe that is why I reject that with every core of my being.  What the world says brings health, I have seen only death and loss.  I want to live. Every day like it’s our last.  I want to laugh, and hug, and kiss and play.  You have always been my 100% love boy.  Never angry, or aggressive.  Always full of joy when you weren’t writhing in pain.  I want to live like you Benjamin.  I want to be 100% love.