Monday, June 18, 2012


Ok, so here's the thing. I try really hard to post really positive and upbeat things most of the time on the blog. Honestly, if I complain I am worried people will think we're not grateful--and we are. We so are. But sometimes I'm in the mood to throw a can of Pediasure or kick an oxygen tank. If I tell you about it, you won't think I'm ungrateful, will you?

I HATE that I have to walk up the stairs to check and see if Livi has woken up from her nap every 15 minutes or so. She hasn't learned to talk with the trach yet, and even if she had, I'm sure she could NEVER make a noise loud enough to be heard over those frigg'n machines running in her bedroom all the time. And, I HATE that I don't mostly walk all the way into her room to look at her and see if she is awake. I walk up just enough to see that stupid sat monitor and I can tell if she is awake or not depending on what the heartrate number reads.

I HATE that my dining room table perpetually looks like this

that the back of my living room looks like this

and that by sheer repetition, I have taught myself the varied times, amounts, and colors of these (I know this is the "hate" part, but on a good note, we have gotten rid of about four of these)...

I HATE that I either have to schedule play time around nebulizer and cough assist treatments or I have to trust that Gabby can play either in Liv's bed where I have to give the treatments or downstairs by herself for that 15-20 minutes. It has NEVER been done.

I HATE that there are bookcases for books, files for papers, pantries for food and toy rooms for toys, but that I still have not figured out a good "out of the way" place to put our monthly supply order of durable medical equipment (including, but not restricted to: tubing, sponges, wound care supplies, trachs, trach ties, trach kits, suction catheders, trach connectors, g-tubes, feeding bags, 4 palates of pediasure, hme's, med syringes---you get the picture), 8 oxygen tanks, meds, walkers, adaptive chairs, etc...

I HATE that it takes me at least 3 trips to get all of our "traveling" bags and the girls to the car.

I HATE turning on the suction machine in public because it scares kids and makes people stare even more.

I HATE that every time we go to the hospital at least one person asks me how long I've been in the medical field.

I HATE that Gabby has to know what all this crap is.

Most of all, I HATE that Livi has to go through this--the whole thing.

Luckily, even when I think about all the things that I hate doing, I remember one thing that I love so much that it makes it all worth it a thousand times over.


  1. Some people already think you are a super-human, so this makes you look a little more like the rest of us:). Love you both ways - Momma

  2. Your "hate" doesnt make you bad, it makes you normal. It makes you Mom to two very awesome little ladies.

    All I can seriously suggest is a professional organizer? Seriously - they thing of stuff others dont. Supposedly there is a place for everything and everything has a place. Although, I consider that to be a humongous lie, who knows.

    Either way, you are pretty groovy to me, and a whole bunch of other people too, Im sure of that....


  3. Putting 10 pounds in a 5-pound sack has been part of your life for more than 3 years when it comes to scheduling, finances, trust that any given medical situation re Livi would last for more than 5 minutes, counting on Tugger to be anything other than a loud coward: what's not to hate? You have way more than the average pilgrim's share of can of Pediasure to pitch, but, hate away, cuz this ain't home. Home is a heart-place, a soul-place, and a place-place where the you and Jesus can rejoice that you hate the right things and love the right ones. Praise him for his grace and mercy! Kick that oxygen tank for all of us!

  4. dude. i hate that you don't write more.

  5. Things in this world aren't supposed to be perfect since it's broken and cursed, so it is perfectly human and normal to hate these kinds of things. And we all know how grateful you are, despite these frustrations.

    Also, I'm not a professional organizer but it's something I'm pretty good at so if I ever get things under control with my boys and you wanted me to come over and try to take a crack at organizing things for you, I'd be happy to do so.

  6. As a really wise woman said to me once when I was feeling stressed out about life and work in general, "Congratulations and welcome to life". No one is perfect, but your situaton makes a little venting of steam mandatory. Vent away, it doesn't make you any less grateful.