Friday, August 2, 2013

Bursting of the Bubble

Where to start?

Summer's just about over now, and by this time next week, Mason will be in the first grade. I am so behind on posts, which really is an indicator of how our summer's been...pretty awesome, really.  Super busy, but honestly, as Maddie would put it, "It's been the Best EVER!"

But now it's ending...and along with that comes some pretty big changes for us, and reality is hitting me, in a big way.  I promise to post about all the fun things that happened this summer...Mason's graduation, our Disney trip, and Maddie's birthday each deserves it's own happy place.  But I'm not there today.  Today I'm in what can only be described as a funk.  I'm feeling overwhelmed and inadequate, and it sucks.

So what brought this on?  Probably the fact that we've spent 2 of the last 3 days at Children's hospital for appointments, or maybe that yesterday's appointment involved Maddie screaming and sobbing her way through a urodynamics study, that left me completely drained and frazzled, or it could just be that last night we started cathing on our own...and what came fairly easy to me in the doctors' office, resulted in pee all over the floor last night, and no access at all today.  I lied and told Maddie we did great, just because I can see how uneasy she is about the whole process.  She doesn't want any part of it, and she's incredibly nervous, so the last thing I want is for her to see how nervous I am too.  My brave face morphed into an ugly cry in the shower.  And what's worse is I feel guilty about it.  Whenever I spend any substantial amount of time at Children's, I come away feeling so grateful and blessed that my kids are healthy.  Sure, we have extra on our plates, but it pales in comparison to what other parents are dealing with.  Even among our SB family, Maddie is doing extraordinarily well, and I feel guilty for any moments of weakness, because I know it could be so much worse. 

I spent last week with some amazing parents, while our kiddos went to SB camp.  I saw how they handled multiple kids, wheelchairs, siblings, cathing, and so. much. more...and made it look easy.  I can't even come close to that, and yet here I am with my little violin, right?   It's just that I've happily resided in my little bubble for probably too long.   She walks independently, she's smart as a whip, and her shunt has been on its best behavior.  For all intense purposes, Maddie's life has been pretty normal.  Potty training was always going to be the biggest challenge, and I knew some things were inevitable, but I've done my best not to think too much about them until the time came.  Well, now it's time and  my little bubble's bursting.  I feel like I'm having a major reality check, and life is about to get a lot more complicated.

If cathing were the only change, I might feel better...but we're  starting a bowel program as well.  ( I know, I know...glutton for punishment) And between the two, the cathing seemed this probably won't be my last meltdown.  :)   I knew these were both going to happen this year, and I'd rather tackle them before she's back in school, and we have a couple more weeks.  I am sure I'll get the hang of it, and like everything else, I'll adapt...Maddie will adapt..and we'll all be ok.  But right now I'm overwhelmed...I'm frustrated...and I'm missing my bubble.  Ok...I'm done.
Putting violins away now...


  1. Ok, so first of are entitled as a parent to an ENTIRE orchestra if you need it some days. So a violin today is just the soloist this week...remember when she took those first steps and the sonata you heard THAT day will replace the solo.
    Metaphors aside...cathing IS hard to get used to...for both of you. It feels invasive and is a 3-4-5 times a day reminder that your bubble has, well, shifted. But, just like you will become routine and it will be annoying and it will be ALL those other things that sb brings along with it. But, in the end...who cares? You do what you gotta do for that sweet face and you move on to the next movement in her symphony. You got this, Little Lady! Wish we were closer. XOXO from NC!

  2. (((hugs))) I am sorry you are feeling down. I dread the process of bowel and continence training. We homeschool, so won't tackle this issue for another year or so. Still love to see your Maddie doing so well. I too feel so thankful for how well our little girl is doing, it's hard to except the down days. But they come to us all. Hang in there. :) I do hope our little girls can meet some day... they are so much alike!


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