I am not sure what kind of hopeless feeling is worse. Now don’t freak out I’m not saying I’m not sure what patient type is worse. This is all about feeling inadequate to the task. See there are two types of helpless in this situation. There is the helpless that I felt the first time I saw her when I walked into the hospital two Sunday’s ago, the helpless that stayed each night by a bed in the SICU unit, reading to her, praying that God would let me keep her, watching her lost in some twilight place. I would read to her and rub her feet and brush her hair then retreat to my un-comfy chair and try and get lost in an Episode of Big Bang Theory before sort of falling to sleep. That helpless couldn’t make sense of the world and wanted very badly for a sign that my wife was in there somewhere, I would have given anything to be the one on that bed instead of her, even though I know that she would be as messed up as I am if the tables were reversed.
Fast Forward a few days and J is awake and talking, well trying to talk and a new set of helpless rolls in, I have never been very good at lip reading or hand gestures, or non verbal cues. I would have to pull off both socks and have both kids lend me their fingers and toes to begin to count the number of times I stood in front of a church trying desperately to decipher something that J noticed or wanted to point out to me. This problem only exacerbated by the fact that I wasn’t very subtle in my remonstrations of trying to figure it out.
Now we are all the way awake, talking and moving a bit, eating this nectar stuff, yes thats right nectar, she hates it, they even thickened the water and I’m feeling helpless for an all new set of reasons.
I have always been a why person when it comes to the rules, just ask the work coordinators at Big Prairie a camp that no longer exists but still bear with me. I know the rules for J’s diet and there was a time that I would have just snuck her real food but I can’t. I can’t face giving her something that could put her back or potentially put her back where she was. She asks for candy, or a ritz pb sandwich and I want to give it to her because I don’t want her to lack for anything but I am afraid to because what if.
If it were just food issues I could handle it but I can’t help her in so many ways. I am at a loss for how to help her turn in the bed or how to help her do basic functions that we take for granted. I can’t help her sleep. She asks me to sing and I forget the names of the songs. I hold her hand or rub her head and cover her up and thats about it. I can sleep in the chair, something that she likes but when she has a need I have to ask a nurse and step out for however long it takes. Don’t get me wrong I have no problem asking a nurse but what happens when she gets out and there is no nurse and I have to help. Will I be able to? I think so but who knows what if I break her, what if I cook the wrong thing and she gets nauseated again and it all starts over?
This entire situation is a clear picture of the fact that humanity is a broken mess that can’t fix itself no matter how hard it tries. Humanity that must be willing to ask for help. God has systematically dismantled my pride and arrogance, I wonder what more he needed to do but apparently he wanted to remind me before the next phase of our life to ask for help when needed and to accept that help when offered.
- J is now out of the SICU and on a new floor at Ruby Memorial hospital, 8 NE room 24
- She is eating, well sort of, if she had her way she would be eating regular food but hey it’s a start.
- Kidneys are still a concern
- They are going to have a PT come in and start working on moving around a bit.
- No real end to the hospital in site, at least not for this week.
- No surgery at this time, they want to do it outpatient.
- Girls are going to get to come in today, please pray for this it will be hard for all three of them and I am not sure how they will handle having to turn around and leave after the visit is over.
I so appreciate all of your prayers. These past weeks have given me a clear picture of the people that love us and care for us, and that Love J and care for her in spite of me. I am so glad that you are here and reading and encouraging all of us.