Monday, May 21, 2018

Anybody's guess

Theodore, do you want to go upstairs or to your bedroom?

*Points indiscriminately in the middle.* 

Theodore, where does it hurt?

*Points to his wrist.* Which is definitely NOT where it hurts.

Theodore, is that what you want to watch? *Yes* Or is this what you want to watch? *Yes*

Theodore, you DO NOT pull things off of the counter. Go sit on the steps for time-out.

*Opens up hallway door, picks a step, and sits.*



I think he's messing with me. 




Sunday, May 20, 2018

The Man. The Myth. The Legend.

In case you were wondering, I DO still have a son named Theodore. He IS still simultaneously adorable and a pain in the butt. Lots of changes have come his way and are still coming for this little man, but here is where we are currently:



Per the doctor's orders, he has been trying new foods so that we can hopefully accomplish a swallow study. By "try new foods" I mean, we are attempting to get him to put anything in his mouth and swallow it. Theodore acts like he wants to eat food; he gets very excited when he sees it and asks to have some. However, all that leads to is maybe a tiny lick off the spoon and then instantly wiping his mouth with whatever he can find to remove said food from his mouth. 

Despite this, though, we have started to accomplish our goal. We have found a great sippy cup for him, we are experimenting with puree type foods and different drinks, and even succeeding in getting something into his stomach. 

Great, right? Well, I guess it depends on who you are. Great for the swallow specialist. Great for hopefully gaining some results from the upcoming test. And great for Theodore who is finally getting to experience some real food. Not so great if you are home with him for an extended period of time. 

His digestive system is in an uproar. Whatever is happening inside his stomach and bowels is pure chaos. It's taken about a month to catch up to him, but catch up it has. 

If he's not sleeping he's pooping. And pooping and pooping. It is wearing this poor boy and his butt out. Now every time he sees us coming with a diaper he cries because of his insistent diaper rash (which is on the mend, thankfully). We have taken away all extra food for the moment, and are rationing out his normal Pediasure feedings so that his body is actually maintaining some nutrition. And, quite honestly, he does not appear to be missing the real food at all.

Finally, after a week, his body is recovering. The doctor and I might be on different pages at this point, but I'll let the doctor have a say when she's the one here changing his diapers and dealing with his aggravated behavior. (Not that I blame him for being aggravated.)

I, more than anyone, look forward to his decanulation, but not at the expense of the rest of his body. (I guess I should say that a swallow study is one of the first steps, at least for Theodore, in working towards getting his trach out.) He never has done anything on anyone else's time frame - especially the doctor's - and he's not changing that now.

Slow and steady continues, but it is forward motion.      

Friday, May 18, 2018

If a tree falls

Sometimes I'm the worst. No, really, don't try to stop me from saying this.



**************************************crickets*************************************************




Wow. Really? No one? 
That hurts, guys. I guess there's no point in going on with this. I'm going to anyway. I'm the worst, what can I say?

Despite the many protests from the audience I just received, I must admit that sometimes I am the absolute worst person. Okay, not really, I'm not a mass murderer or a puppy killer or a fan of Nickelback. But, in the past, if my cup got tipped at just the right time I may have been known to slam a door or crush my childrens' hopes and dreams with just a word. Hypothetically.

Unrelated: I may be starting to see why no one tried to stop me earlier..... 

But there's something that I've been wanting to get off my chest. Deep breath. And go.

When the kids were little, Israel the eldest, like Gandalf the Grey- very distinguished, would be getting his breakfast or possibly even helping the younger two get their breakfast. At this time they were all under the age of 5, so we could receive WIC, therefore, having gallons upon gallons of milk in our house. And even with 3 children, drinking THAT much milk is a challenge. So (drumroll please, mommy moment of the millennium coming) I would make Israel check and see if the milk was good by tasting it. 

*Hides my face in shame* Don't look at me.

But, I mean, I didn't want to taste nasty curdled milk! Can you imagine?! *nudges you* Israel can, know what I mean??? 

TO BE FAIR, nothing makes you feel more worthless or useless than being a mom. Why do we even speak, moms? Nobody hears us. I will literally repeat everything I have said today and yesterday and for the past 5 years over again until I'm dead. And the trash will still be on the floor and the dishes will still be scattered around the house and my daughter will still look at me directly after I have answered a question that SHE asked and ask me again. Instantly. As though I never answered her. And the daily routine will be written down, talked about, and stapled onto their faces and they still won't do it. 

And my anxiety will rise and my life crumbles. And who cares about curdled milk anyway?

*Shouts from the rooftops* I will no longer feel bad about the curdled milk!! (Actually, I probably will. That's something that you can't untaste. Poor guy.)

And the age old question remains: If a mom talks to anybody, does anybody really talk? 


Monday, May 14, 2018

Acrobat.

I'm 20 stories up stepping out of the window that's almost as tall as myself. The adjacent building is so close I can almost reach out and touch it. In fact, I am certain I could make it through the open window facing me with just a jump. But I can't. The powers that be do not allow it. Instead, I have to walk a tight rope that I'm not entirely certain will even hold me. All the while people from the surrounding rooms are throwing anything they can find at me to trip me up, make me lose my balance and retreat back into the room from whence I came. 

Hours upon hours are spent here, nay, days upon days; until the thought of falling to my death is far more appealing than sitting on the stupid phone any longer to coordinate one more doctor's appointment for Theodore. 

I would literally rather fall to my death. I'm not sure I could explain it any more clearly. 

I- would rather- die. 

I don't know whether it's bureaucracy or stupidity that makes it so difficult. Probably a little of both, but it really doesn't matter. There is no getting around it, no jumping is allowed. There should be a sign that says "Common sense not permitted."

Thankfully we are to the stage where the appointments and trips are far fewer than just a year ago. It still isn't something you get used to, or find less annoying over time, however. Actually, it is the exact opposite. 

Follow-up reminders that appointments are due come in the mail and while I peer out at the stupid tight rope knowing I have to make my trillionth trip, death quietly whispers to me, "Just jump."   

Sunday, May 6, 2018

War wound.

Two words:

Sewing injury.

Six words:

Sewing injury not involving anything sharp.

Did you even know those existed? I didn't. I do now.

I've been suffering with this war wound for two weeks now, and I'm pretty certain I'll never have full function of my hand again. Okay, that might be pushing it -- a little. 

For those of us who aren't seasoned seamstresses/sewists, let me warn you, you can seriously hurt the joint in your thumb. The girls and I worked furiously for 5 days, measuring, cutting, pinning, sewing, more pinning, more sewing. I am still paying for it. In fact, I think it's gotten worse. What started as a tight, muscular cramping is now a constant, dull, hot aching in the joint.

I know what it needs, but the creator in me is not willing to do it. I have so many ideas swirling around in my head that if I stop accomplishing them I may implode. I wonder if that really is the cause of death for most artists- the inability to produce their inspiration.

So, I'm left with a dilemma. Deny who I am and DIE (I'm pretty good with the exaggerations today) or push through a little pain. No, there is no in-between, don't be ridiculous.