Where do you start?

It's been a long time since I hit the publish button on my blog. I have tried numerous times to update but it just hasn't been in me. I'm going to start trying to write again. I do miss it. It would be impossible to try to cover what has happened over the last year so I think it's easier for me to start where we are now. A little over two months ago we brought Kyle home on hospice. Our version of hospice means that while there is no more hospital...no more surgeries...we still treat Kyle with antibiotics and other medications when needed. He is on a very tight pain medication schedule he is in a lot of pain at times so our goal is to keep him comfortable and not scared for as long as we have. He struggles to sleep and that is tough on both of us. His body is very tired but he still is fighting. I'm in awe of what this beautiful boy endures every day...yet he still fights. He told me he won't go to heaven until I can go with him. That was a very painful conversation. He knows his time is limited. I really believe when he's ready it will be the right time for him. It will never be the right time forus though. I don't think there are words to describe the pain of all of this. I would like to end this blog with something Mark wrote. I promise to update at least twice a week from now on. I do want you to know this is going to be a horrifying thing for us. The pain now for our family is so great it takes my breath away. The love and respect I feel for our Kyle is one I could never adequately write about. What this child has endured over the last 7 years is something that you couldn't believe unless you sat and loved on him every day since the beginnig. ****************************** TERMINAL Like many people, my life is full of small contradictions and grey areas. I love my wife with all of my heart, though she would say, with some accuracy, that I don’t always show her the true love in my heart. My family is the most important thing to my life, but they would tell you they don’t see me enough.  I work hard and I can be really good at it but I’m often not able to give 100% to it, or to anything for that matter.  I like to think of myself as a basically healthy person, but I tend to overindulge in food and drink from time to time.  I suppose that I’m somewhat paradoxical by nature.   However, that seems to be changing fast, along with most everything I’ve ever known.   Kyle is “terminal”.   I never thought that I would have to look into my beautiful boy’s eyes, sparkling with imagination life and love, and envision the impending horror that is coming. The thought of no life in those eyes is inexplicable.   I didn’t know what is was like to watch a heart assuredly break in front of me, and feel my own splitting into pieces, until I’ve seen his mom experiencing the long, slow, painful deterioration of her baby.  This abomination is compounded by the realization that, although we share in the angst and agony of this journey, we grieve alone.  Words, touch, even love have no chance of easing the torment.  We can hold each other’s hand through this but the cloud above can darken the brightest of days. Watching all of our kids interact invokes both pleasure and pain.  They love so genuinely and speak so excitedly of a future that will evaporate in an instant, sometime all too soon.   We encourage the fantasy merely by agreeing to their speculation of an anticipated event or just by our silence.   This is all black and white.  But mostly black.   It’s raw, gut wrenching and harsh.     On one especially restless night I searched endlessly for information on how to prepare for the death of a child.  Although there are a great deal of resources to help one prepare for his/her own death, or how to deal with death after it has happened, there isn’t much at all on our subject at hand.  To Kate and me, this is just another situation where we are on our own.  There’s no book on how to do this.  No guide on how to interact with a world that doesn’t slow down no matter how much we want to totally stop time.  No way to make people know how much we appreciate the abundance of cards, letters, e-mails Facebook postings, and the continuous offering and giving of support.  No tutorial on how to help each other and our kids hold our precious family intact and sane while life literally slips through our fingers. No logical solution or determination to the ongoing medical decisions we have to make. So we stumble along, awkwardly blending normalcy with the realization of this imminent and unnatural tragedy.   Life has changed for all of us. Things look and feel different.  What used to be important seems trivial. What was familiar is foreign.  I feel as though I’m learning and experiencing things I’ve done thousands of times in a new way.  Neither of us means to be strange or distant…we just are.   Life right now is more about memorizing his smell, gazing into his eyes, listening intently to what he says and hanging on to those words like they hold the meaning to something mysterious and magical. It’s about keeping him comfortable and happy.  It’s about making sure Alex and Jack aren’t alienated and dismissed throughout this process. When we have nothing else to give, Kate and I need to reach deeper and give more because they deserve it and they didn’t ask for this either.  Life will be random and we will take opportunities to celebrate it with all of them until we’re forced to face our darkest fear.   We also need to just love … each other, him, them the rest of our amazing family and friends and all of you.     I wish I believed in miracles, or better said, I wish I believed that the one physical miracle I desire could happen.   I suppose I do believe in miracles in a way because I think I’ve witnessed some.  I also need to believe in heaven because I need to see Kyle again. I have to believe that we’re sending him to be with my mom and Kate’s mom to play and love without the pain and burden this life and this body has imposed upon him.  I want to be a better man, husband, dad, son, brother and friend because of him.  I wish I could go ahead of him, instead of him or with him, but that’s not the way it works.  Our jobs are here and our destinies are undefined.  We will live here and struggle until we can join him.  I hope he recognizes me. Mark