11/24 - AM Update

Well, here's to another wedding anniversary stunted by SMA. It's not all that bad though. Diana and I have had PLENTY of time to the two of us over the last, nearly, two weeks... just not the quality time that one might expect out of life. Speaking of Diana - she was up with Emily all night last night at the hospital while I battled it out with God on my knees at the RMH. This was followed by deep dreams and waking up throughout the night. Too much to think about and such weighty decisions.

After Linnea died Diana and I went on a "silent retreat" with Klesis in Connecticut. It was a very important experience for both of us. One thing I learned there is when I am talking to God, get out a pad of paper and just write what you "hear" or are thinking with NO filter whatsoever. I did this last night, in the dark. Call it want you want, but I was reminded/told/comforted (pick your own word) that no matter what condition Emily is in God already "has" her. I was pleading for Emily's life and wanting her back and I felt that God was asking me "are you sure?" I said "no." What I want is to not feel the way I do -- helpless, hopeless, comfortless, and used. If I cannot have Linnea and Emily then I want Him to make me feel the way they make me feel. I want to be caressed with the kind of love you can only get from the undeserved, reciprocated love of a child of your own. If Jesus is enough, then He can do this and the Bible says He will -- and I am going to understand what that means and learn to desire what it is.

Emily's white blood cell count was over 51,000 this morning. That is astronomically bad. She is fighting an infection that we cannot see or measure b/c it is not in her lungs, as far as we can tell. In fact, we are not sure where it is at this point. In order to start her feeds she either has to be reintubated or we have to tell them that we would not like her to be reintubated regardless of the situation. We are leaning towards the later.

We are spent and the logistical nightmares of continued DME provisions that awaits us is making me feel sick. We have been discharged from Hospice b/c that is the policy when the patient has been admitted to the ER and all of Emily's DME was provided through them, so now we have some decisions to make, again.

So - another thing I wrote down last night was that I should read Psalms, Proverbs, and Ecclesiastes. So, I will read them today if I can. Peace.

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