This is Life

Life is back to normal after my getaway this weekend. I'm the full time nurse, driver, chef, maid, teacher, counselor, referee- AKA, The Mom. I'm happy to be back, I felt practically naked without my babies in tow. I do miss that peace and quiet though.

Lucy continues her vigilant stakeout of the kitchen and has seized multiple opportunities this week to steal food. So shes stuck with a case of the cramps, bloating, nausea, and diarrhea. This leaves her in a bad mood. Actually, bad isn't a strong enough word for it. Food actually seems to turn Lucy into the she-monster from hell. She actually tried to bite me! Can you believe that?

Its tantrum city around here in between snuggles on the couch. It can be a bit much to deal with while Big Zach has been working 12+ hour days most of the time. I'm usually a pretty patient person that doesn't often yell but today I actually found myself shouting, "Great! Now look! You're making me yell! Would you just stop it!!??" Seriously, I don't want to turn into one of those parents that everybody is staring at in public because she's clearly lost her mind on one too many errand runs with the kids, but good grief I can only take so many senseless fits from a 4 year old before I am forced to yell. I'm kidding.....but I'm not.

Parenting a child with a complex and unusual medical condition has certainly begun to develop itself into a conundrum. Dealing with a normal snarky, snippy, stubborn 4 year old is a challenge for any parent at times, but throw a rare medical complication into the mix and things get extra spicey. At one moment today I found myself almost laughing wondering if it were she or I who was acting like she'd lost her mind.

I know she is acting out because she doesn't feel well and just doesn't know how to deal with it. She's starting to get angry, jealous, and resentful that the rest of us can eat what she now knows is some tasty stuff. Also, because her feed rate cannot be increased due to her extremely slow moving small intestine, her body is probably telling her that she needs to eat. She steals to satisfy her cravings and I cannot even begin to imagine how to live a life without food. I feel the utmost compassion for her reality. I live everyday wishing things were different for her and advocating so she can get treatment that will hopefully get her there.

After that, all I can do is continue to encourage Lucy to stay positive about her life, to fight for each day, to talk to us when shes upset, and to enjoy the good things that she does have in her life. I need to maintain calm discipline and take each day as it comes just as I would with any 4 year old. Oh, and I also need to spend this weekend at Lowes looking for some heavy duty locks for the garbage can, fridge, pantry, and dog food pail. :)