Vertical

Keeping it real around here.

The "take it a day at a time" (sometimes minute at a time) attitude that has been present this week has produced results such as:

Thisand this
and this
No, these are not pictures taken from a Hoarders episode. This is the kind of stuff that has fallen by the wayside. Old laundry-that really is clean, or at least it used to be two days ago when it was put in that chair with the intention of being folded immediately. I'm telling myself because I have the world's smallest kitchen sink, it just fills up faster. Never mind the quilt that is drying on the dining room chairs.

Old Niki would have started hyperventilating and had her right eye twitching if she was living in something like this. She would have stayed up all night scrubbing, even though she was exhausted. Old, clean, organized Niki is gone. I guess she's still old, but not clean and organized anymore.

I'm not going to lie. This week has been tough. Emotionally, physically, all the "ly's". Two hospital trips is two weeks has not happened in almost a year. Cole is kind of on the mend, but more demanding than ever. My body has decided to shut down and declare war. I'm not eating or drinking or sleeping enough, so it's decided to give me a kidney stone as a present for my efforts. On Tuesday, I had that old, familiar feeling of being stabbed in the back and muscle spasms up and down my sides. Can't sit, can't stand, can't really do anything but lay curled up. Tell Cole that. He's not the restful type, or at least the NON-pestering-needs-all-of-my-attention-all-of-the-time type. I have been relinquishing all responsibility once Brian hits the door, and all three of us end up purely exhausted once night falls.

Cole's new diet seems to be having benefits. He is slowly getting back on track with his digestive system. Oh, the formula that the doctor wanted us to put him on...it's only available online and it costs $409.00 for shipping. WHAT?!!! Someone out there knows that they have a narrow consumer market and is making bank. A $80 case of formula costs more than triple the amount to ship? We decided to search out something local and of all things, we found Hemp milk. No, we are not starting our child on medical marijuana. This was the only non-diary, no sugar, low carb option we could find readily available. It's close to soy. He likes it and it has made meal times a little easier. He is still having a lot of smaller seizures. When the doctor asks me how many, I have to be honest and say I don't know. It is so sad that we don't record anything under 5 minutes.

He has also decided to wake up in the middle of the night every night this week, totally wired even though he has not had rescue medication and stays up for hours. This in turn, keeps Brian and I awake for hours. So, when nap time rolls around, I try to catch a few winks instead of being productive and doing mundane things like cleaning the kitchen or folding laundry. I should be sleeping now, but a few of you have inquired after our welfare, so I thought I would make an update. Thanks by the way. It's nice to know that we couldn't just slip off into oblivion unnoticed :)

My favorite answer to one of our dear friends when he asks me how I'm doing (and it's not going great) is, "I'm vertical." It's code for I am up, and dressed and semi-clean. I'm not curled up in bed with a pillow over my head trying to block out my reality. Although sometimes it is tempting to hang out in depressing darkness, it never really accomplishes anything. I'm taking care of immediate needs, but other stuff like laundry and dishes are just so not important right now. Instead of forcing Brian to mow the lawn tonight, since we look like we have started a jungle preserve, I am suggesting that we bust out of this joint and go to the circus. It's set up just down the road. Go mingle with our fellow clowns and death-defying stuntmen. Why not? The grass will still be here tomorrow.