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.