Wednesday, July 20, 2011

control is overrated...


Processing the complete lack of control I have is overwhelming…I REALLY like control…I like predictability I like to know what comes next…a schedule…choking gave me a sense of control that I could control what went in Maddie’s mouth…that I could control her environment…I could blame myself for not picking up good enough or watching her close enough…but with stricture…the closing of her esophagus…there is no control…I cannot tell when it is happening…I do not know if it will happen again sooner or later…so giving up the notion that I know what is going on…is tough…and it has made me realize that I need to let go…but I am not sure how…I am scared of this journey with Maddie…I am scared of what the future holds...I can handle a crisis…in the moment…I struggle with the unknowns and what ifs of days to come…I make decisions quickly without hesitation in a crisis…but when it comes to thinking of what I would do if this happens again…I think I would do the same thing…I would handle it the same way…doctors do not have answers…they are full of “in theory”,  “my experience tells me”, or “we will have to wait and see”…it is so easy for someone not living in this to “wait and see”…it so easy to point the finger when you look into our lives…the GI doctor in Casper will not assume responsibility for Maddie…I was told that no one in Casper would…so we will continue our trips to Denver -4 hrs away…I was told that it is only a few more bucks to go to the ER in Casper and then drive to Denver to be safe…a few bucks to you is alot to us…and it is not the money --it is the time…waiting in one hospital knowing we are going to be sent to Denver either by car or helicopter…I get no one wants to be sued over the treatment of Maddie…but I am at a loss…do we move to Cheyenne…because we cannot leave the state of Wyoming because of the huge benefits for Maddie…or do we stay here and resolve ourselves to this is our “normal” and we need to just deal…I have been also thinking a lot about the nurses we encountered…some good and some just oblivious to us and our Maddie…one asked what Maddie’s mental capabilities were…I asked her what she meant by this…she gave the “you know” answer…I said I did not know…I said she is a typical 2 year old and can give you a yes or no and mean it…I still am not sure what this statement means…would you treat my daughter different if she was different then who she is…she still needs treatment…she still needs pain medication if necessary…I told the nurse about the veins of Maddie…she blew one and had to poke her again…it drives me nuts how it becomes a pissing contest…if you do not know how to get a IV with a small child with flaccid veins…then ask someone who does…she apologized up and down and tried to make it better with stickers and tattoos…not impressed- just pissed…I am coming down from a anxious high…I am crying and trying  to understand…I guess this is what you call stressed and overwhelmed…I thought I could handle it…I thought I was handling it…so to manage I am hugging my kids…trying to sleep, eating good and exercising…in theory it sounds like the right things…but in reality I may just need a stiff drink…Maddie is day to day…yesterday she ate like a rockstar…today she choked on the same thing she ate the day before…just hoping for the best and preparing for the worst…only time will tell…but if I know Maddie she will be just fine and we will adjust…

9 comments:

  1. (((HUGS))) Wish I had answers for you. :-(

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  2. Praying and believing really hard for your peace and Maddie's healing. Prayer works. I know from experience.

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  3. Oh, I am sending love your way. Being a nurse, I apologize for those awful comments and bad IV experience. It is not right...

    Control is a hard thing to let go of...trust me because that trait runs deep in me. I will pray for your family.

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  4. I wish I was there to hug you and Maddie in person! I have the same day by day fears with Emily and the cancer coming back. But then, I think it's parenthood in general, at any moment your heart could be broken into tiny bits and pieces. I wish I had an answer for you and I wish the Dr's had an answer for you.

    Kelli @ livinglifewithes

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  5. Lots and lots of hugs for you! I wish there was more I could do for you.

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  6. Girlfriend have a stiff drink...if I was there I'd pour two and drink one with you! I can't imagine the stress of not being able to control this situation! We are a lot alike in our need or desire to have full control so I understand how frustrating and not to mention scary this must be for you and Maddie! I clearly I not dealt with this, so it may not even be an option, but can they do routine dialations so that at least the trips could be schedule and not emergency middle of the night trips? My guess is probably not or you would have already done that...I just wish there was more I could do to help! Lots of hugs!!!

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  7. Oh man, that does sound scary and stressful and overwhelming. I wish there was something I could do to help :(
    Sending you a hug and hoping things get a little better...And I agree with Wren, go ahead and pour that drink!! Hang in there Kim...And we are all here for you if you need to talk.

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  8. Hugs and prayers coming your way. Such stress for a beautiful girl and her mama. Hoping that things get a little easier.

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  9. Hugs! Maddie is a rock star and you are a rock star mom!

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