I get knocked down, but I get up again

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.

Recap

  1. J is now out of the SICU and on a new floor at Ruby Memorial hospital, 8 NE room 24
  2. She is eating, well sort of, if she had her way she would be eating regular food but hey it’s a start.
  3. Kidneys are still a concern
  4. They are going to have a PT come in and start working on moving around a bit.
  5. No real end to the hospital in site, at least not for this week.
  6. No surgery at this time, they want to do it outpatient.
  7. 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.

5 responses to “I get knocked down, but I get up again

  1. Pastor Aaron,

    I am so happy to continue to hear the testimonies. It is really funny to hear the musings from a patient’s family and as I read this I wonder if this goes through the mind of a lot of patients?? Being a SICU nurse there are times we feel that same helplessness but for different reasons, we get attached to the family and want to see the patient do well and all we can do is trust in God to bring the recovery because it is in His hands! You Pastor Aaron, God has a reason for you and J and he is going to equip you during this whole recovery process!!! Please give our love to J from Angela and I, we are so excited to hear the good report!! Please keep the blog update coming…

    With love,
    Scott and Angela from MI

  2. Hey Aaron, I know the feeling.

    Let me explain.

    So I’ve been waiting 5 months for 4 documents to come here from the Brasilian consulate in Atlanta (birth cert, etc).

    They were sent here in the return envelope which we sent the consulate along with the original documents and $80. Twenty bucks per document to have the consulate authenticate them.

    Turns out that 2 weeks after they sent them here authenticated the post office here in Curitiba went on strike! The documents were sent back to the consulate.

    We didn’t find that one out for over a month! So then I had to contact my little sister who is a postal employee out in Wyoming who was kind enough to send the consulate another envelope. She did but the consulate didn’t manage to get it out of the country until mid December!

    After another month and a half of sweating bullets we just got the documents yesterday! Why do I say ‘sweating bullets’?

    Because, Aaron, if I don’t have my application for permanent resident into the Policia Federal by Feb 13th I have to leave the country. I have no way TO leave the country and no where to which to go!

    Oh yeah, on top of that. Because my birth certificate is from Wyoming the consulate in Atlanta wouldn’t authenticate it. They sent me back the certificate along with my $20 dollar bill and said, “Sorry, but we can’t authenticate it as it belongs to the Los Angeles territory.”

    It gets worse.

    Today I went to the place where we have to register our marriage (we were married in the US, but it has to be registered here in order to be ackknowledged here).

    The lady told me we were supposed to have an authorized translation of our marriage ceritificate authenticated (NOT the American one they gave us at the court house back in Alabama).

    So NOW…

    we have to go to a lawyer to have him apply to some judge and get permission (so to speak) for them to accept the documents as they are. And this could take how long??? We have no idea, but are leaving it all in God’s hands.

    So, in relation to you and J, I understand what it means to get all excited that the tide is turning (that you’ve jumped that seemingly impossible hurdle), gave a huge sigh of relief only to look up at the next impossible hurdle in front of you…looming betwixt you and your goal.

    So…

    we take a deep breath, poise ourselves for the jump, say a prayer and…you get the picture.

    Hang tough brother, you’re going forward.

    Much love in Christ,

    Christopher

  3. Hi Aaron,
    I am Karen’s Mom. I have wanted to write to you since this all began but I didn’t know how. Karen told me last night I could. Just wanted you to know that J, you and all of your family are in my prayers. Hang in there and just take one day at a time. Nancy

  4. Aaron, I will continue to pray for you and J. I know you are struggling with a wife that is not the same and I’m sure you are afraid she will never be the same. It is a helpless feeling.
    I can only say that God is there in all of this. Sometimes in the quiet of the night, He speaks more clearly because we are quiet for the first time in awhile. Sometimes these events make us think about the priorities in life. I can see you are trying to decide about where God wants you.
    If you are feeling led to do something different, than that is what you should do. God is providing signals through others. You know the joke about sending two boats & a helicopter…Don’t miss the boat, Aaron. It sounds like you are drifting along and God expects more from us.
    I will pray for J and healing, for you to know God’s will and path, and for your girls as they go through separation from their parents.
    God is sending a message – listen for it. LuAnn Mudrak

  5. i am so moved by ur trust in the Ultimate Healer and ur love for J. He is moving mightily in ur lives during this valley. i am praying now as i think about amberly and zoey getting to see their mommy after so long. i am also praying for all of ur hearts when it comes time for them to leave. i have tears in my eyes just thinking about how emotional it will be. however, i also know there are no two more equipped parent’s to provide that support than u two. love and hugs to all of you. Praise God that she is eating even if it’s only nectar.

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