Tuesday, February 28, 2012

I want things to be "normal" again

I really want to enjoy Mallory being a baby, but is it just bad of me to wish this year away already? She has at least 6 more rounds of chemo after this week left. That's just months and months of cancer crap that we have to deal with and not even knowing if it's going to work or not or if it will be extended...

A day in the life of me starts by waking up, drawing up 5 different medications to "try" to get her to take. Sometimes resulting in a vomit or two and I get to start the whole process over again.

Drawing up heparin, flushing her lines.

Getting Jillian breakfast, changing both girls diapers which lately has been a whole ton of blow outs in the morning so we usually end up with a morning bath.

By the time this is all done its 10-11ish.

Drawing up 1 more medication around 12. Changing both girls diapers.

Then its nap time, which sometimes happens and sometimes doesn't. It's hard to get a schedule for either girl when life is so hectic right now.

Changing more diapers. (It's inevitable when 1 girl poops the other does too!)

Attempting to get around to doing some type of housework which usually doesn't work. Then trying to plan dinner, but who has time for dinner when you barely have time to go to the grocery store and everything goes bad before you can use it. So we are a preservative only diet right now (healthy, right?!).

Jillian almost ALWAYS gets a bath after dinner because the girl just can't help but make a mess.

Get Jillian tucked into bed with a book, prayers and lots and lots of kisses.

Every 4 days we change Mal's dressing over her broviac which is turning into quiet the fight with her rolling around, tugging on her lines, and just being a baby in general. Remove old dressing, apply 3 beta dyne swabs, wait for it to dry 3-5 minutes, then apply new gauze and tagederm all while wearing masks and trying to keep her busy and as sterile as possible.

Every week we have to change end caps, which is SUPER quick and easy but still tedious and we have to be as sterile as possible.

Draw up 2 more medications. Put a some numbing meds on Mal's leg.

An hour later give Mally her Neupogen shot.

Ohhh wait then throw in an appointment or two multiple times a week. Not to mention she's going to start crawling, teething, and possibly walking during all of this. Taking care of Jillian's basic needs.

I can't make my own baby food because it would be just a pain to try to transport it back and forth. Then there's the fact that I am afraid that I wouldn't make it sterile enough. I LOVED making baby food for Jillian, it was seriously one of my FAVORITE things to do. Call me crazy but I just enjoyed so much of it.

Then throw in the fact that Mallory is a HORRIBLE eater and sleeper. I totally can't blame her. She just has NO way of getting on a good routine, during chemo we wake her up every 2 hours for diaper changes, she will NOT let you hold her for most feedings. Most of this started after the initial tumor resection, and has gotten worse since her last surgery. She wants to lay flat and not be bothered. So here I am propping bottles, letting her sleep with me, and creating such bad habits because I have NO choice. A mom can only watch her child suffer so much before desperation kicks in. So yes my child will most likely have a bottle till she's 5, she will most likely sleep with me till she's ready to go into her own room. I have no guilt, this is not the road I would choose had I been given a choice.

I am complaining, flat out complaining. I should be able to look forward to her rolling over, but when you go to the bathroom and come out and your child has IV lines wrapped around her head that equals not much fun. Ummm crawling on those nasty hospital floors with a cord coming out of her chest, I am terrified once she starts she's going to rip it out of her chest. Teething, talk about having a meltdown over so many fevers she's going to run just because of them!

Throw in poor Jillian on top of all of this, her life revolves around Cancer too. We have to drop her off at the drop of a hat if Mallory gets sick, she has to stay away from us weeks at a time. She doesn't understand any of this, she just turned 2, she shouldn't have to go through this EITHER!

I just wish I could look forward to all these things. I do look forward to her getting older because I just know with each month she gets is another month we get to spend with her, it's just trying, emotionally draining, and exhausting.

I love Mallory so much, wouldn't trade her for the world. I am not complaining about having her, because she is great, spectacular, resilient and much stronger than I could ever be. I just wish we could go back to normal life, life before cancer. I just liked it so much better.