Frustration

I was just thinking today about our trip to Cincinnati next week. When we go to Urology each time
we've had an appointment with them, they have us fill out a small questionnaire about things like, how do you feel your child is doing? How do you feel caring for your child?  Are you ready for changes that will affect your child's quality of life?  And the short list asks you to rate it on a scale  of 1 to 10, and asks about how you feel and so forth.
To be honest with you , my confidence has now shot to a year's low.  How do I feel caring for my child? Like a failure. I just feel like no matter what we do  its just not working.  Are you ready for changes? My answer is no. I just want this all to work itself out and I want to enjoy life a little bit.  How do I feel right now? Stressed, frustrated , and like I wish we never had the Mitrofanoff done (like we had another good option or something though).   Don't get me wrong , most children actually do well after having the Mitrofanoff surgery done. We were so confident that Maggie would do very well that we could have this done and leave it all behind us and we could go on and just enjoy life. Meaning no doctors visits for a while, no problems, no complications.  Actually only a small percentage go on to have problems after this surgery. So we had no idea we would be dealing with this at all.

We still spend more days not being able to access it because her bladder is still spasming. She's only had a few leaks but I'm not sure where its coming from, if its from below or from her supra pubic tube ( that leaks every now and then too).   Today I was only able to get in it once.  I wish there was a better option for Maggie.   Am I ready for changes? Not at all. I don't want Maggie to have to go through another surgery.  Not at all.


I'm tired of doing fundraising. I feel like we've used up our good graces with people and what happened for us last time , was a one time deal.  I hate having to do it at all just to travel . I wish it were cheaper to travel and trust me we try to do it as cheaply as we possibly can.

I'm sure some of my stress that I have I wouldn't have if we lived closer to Cincinnati, but we don't.  With having the issues we had just getting some one to change her supra pubic tube  here at home, it just leaves me feel so unsettled about having the issues we are having at the moment.

The amazing part of this is that Maggie is just , well, being Maggie. Totally unphased by it all ,which I wish I could feel like.I think that's the beautiful thing about how God made children. They totally trust us and don't let those things that grown ups stress about them bother them as much as they bother us. Though it does bother Maggie to some degree because she did tell me the other day " No more doctors ,mom, no more surgeries."  So she has her own way of telling me how she feels about it , but she can tell me and just go about her day like it was just part of a short conversation. Where grown ups tend to dwell on  it after its all said .

 Maybe one of these days I'll look back and think; what was I stressing about for? But it feels all very real right now. Its hard because I can't make it better for Maggie. Its not one of those things you can kiss like a boo boo and make it go away.