Wednesday, May 29, 2013

He is writing his own story.

"Help him live to the last breath." "Make every second count." "Give him all our love." These are simple sentiments I shared with the chaplain and our hospice nurse this morning as we discussed my feelings and our son's health. Dr. N, the hospice attending came to our home yesterday and in our discussion she prepared us for the moment that Wyatt has been dodging for the last year. Could this be "it"- the infection that won't respond to antibiotics, the pain that will cause suffering, the decline that he won't rebound from. We made a couple plans, tossed around multiple theories, talked about the boy who continuously confuses yet amazes us in the same day. Our hospice nurse, Gwen, and the chaplain, Tom, visited this morning to talk more, to try to prepare me more. It's difficult to prepare ourselves as we've settled into this as "normal" and have adapted to this pattern. We've become tolerant to a certain level of "sick." The truth is, there will always be doubt in the back of my mind as he's proven so many wrong in the past. Since the day he was born, he went against everything the medical books said would, could or may happen.

I love him so much for that. He is making his own way. He is writing his own story.

Though, I do hope I won't let myself avoid the truth because of that lingering doubt. I don't know how to give up. And I don't think I ever will. But I also, as his Mommy, can't possibly allow him to be in too much pain. I can't put into words what "too much pain" is, I just know it when I see it. We made the decision to add Methadone back into his complex cocktail of medicines this week, to help control the pain. Methadone works a little differently than other opioids, having the ability to reach different receptors and types of pain. We're hoping in combination with his Fentanyl PCA we can find him relief.

SuperWy, our super boy, is sick. His body is struggling. Is this "it"? I don't think anyone would dare say for sure anymore, but we can't deny that it very well could be. Today he is sleeping soundly and looks peaceful. Tomorrow we will redraw a new round of cultures (if nothing changes between now and then), to be sure we're not missing something, anything.

And we continue to look at life one day, one hour and one minute at a time, just as we have all along.

Family, friends, loved ones, anonymous followers and those that just drop in from time to time- thank you for all the thoughts, prayers, love and support. We appreciate it so much. If you have it in you, our super boy could use a few more right now.
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  1. An infinite number of prayers being sent to you and your family. Something about Wyatt drew a closeness to me and really showed me how important some things really are. Thanks SuperWy, you've made me see so much more!

  2. Oh, oh, oh...

    praying for you

    ALL of you.


    Cathy in Missouri