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.   

Wednesday, May 2, 2018

Spring cleaning.

Boo.

*whispers* It's me.

It's time for some spring cleaning. Digging this blog out from all the boxes and things of life that have piled up on top of it, sweeping away the cobwebs, and getting real. 

This past year has been a tough one. Down to the bones tough. And I've had some pretty rough years- times I would never ever choose to relive. But this one tops the cake. 

(Theodore is phenomenal, by the way. And other than making me rethink a few life choices as he now enters his "threenager" stage - yes, he's 7 - he is the man. So no worries there.)

This past year left me falling. Unsure. Questioning. Crying. Everything, literally EVERYTHING that I had stood on before, everything I KNEW to be true, was suddenly pulled out from under me. I was like those cartoon characters who run off a cliff but don't realize it right away, and once they do it's a fast fall straight down.  

I have been a Christian, a Jesus-follower, a Bible believer, WHATEVER you want to call it, for almost as long as I can remember. And I've seen and been through some tough stuff. And thanks be to God he has been faithful to comfort and guide and redeem and work and love. Up until, it felt, this past year of my life. I became confused, hurt, and even felt deceived by God- into my core. 

I walked around for months with nothing below my feet. No foundation. Zero. And, yet, I had the conviction that God was true. I couldn't make sense of anything. I didn't know how a relationship with God even worked. The dichotomy was this: 

                                                       Something inside of me absolutely knew that Jesus was the only answer and option to it all  BUT  it didn't appear to be a good one.

                                                        And knowing that I am saved eternally from Hell, never questioning that, I felt like a puppet and God could do whatever He wanted, if He cared, because the ends justify the means. 

That's hard to say. To put into writing and admit it. But there it is. The past year of my life in 2 sentences. 

Maybe you can relate? Maybe you've felt this in some way? Feeling deceived by God was the worst. I was like an animal in a race with something dangling in front of me, trying to get to it. Believing that I could- indeed, even that I had already been given it. And then it was taken away. No rhyme or reason- just gone. That started a cycle for me of blaming/questioning God every time something went wrong. Of wondering why, "Why, God, would you do that?" "Are you serious?" that eventually turned to "No surprise." "Of course that would happen."

I became callous without actually wanting to be callous. And critical without wanting to be critical. I was tense. And I was tired. I started noting how, even when I was trying to be open to God it would backfire. I would purposefully stop and pray about something and the exact opposite would happen. Sometimes almost immediately. I would put my hand to a task and be accomplishing things and would stop and pray about letting the Lord accomplish it in me and then, and only then, would I stop being productive, or EVERY. LITTLE. THING. would go wrong. 

"No surprise."

Slowly, and I mean s-l-o-w-l-y did my conviction turn once again into baby steps of faith. Teeny teeny tiny steps that I can only assume the Lord renewed in my heart and I started disciplining myself to spend time with Him once again. And I'm going to be honest, it wasn't because I was getting anything out of it. I felt no different. I was still confused and hurt and pretty closed off to anything He had to offer. And that's how it remained. For quite a while.

A few weeks ago we had one nice morning of weather. Winter had ceased for the moment and I was enjoying my coffee on the deck, unbothered, alone, content. I stepped out in discipline, not sure it was in faith, but thanked God for the morning weather and accepted it as His gift to me- a personal gift because He says He is personally invested in my life. INSTANTLY, I'm not even kidding, wasps started buzzing and landing all around me. I had not seen a single wasp up until then. It may seem stupid but that was the picture of my life. Something good instantly gets rescinded by something bad. 

"No surprise."

But, almost just as instantly, God said to my heart "Satan seeks to steal, kill, and destroy." That truly was the first thing I felt God speak to me in almost a year. And it got me in the gut. 

That was it. That was the key. That was the truth that had eluded me for so long. 

I so easily forget that Satan has real power in this world. I forget that his one and only goal is to get my eyes off Jesus. I forget that the closer I get to God the harder Satan presses in. I forget that he prowls around like a lion seeking whom he may devour. 

If we don't claim to live our lives for God Satan is unconcerned with us. But when we do he is very invested in us. He speaks lies. Lies that make us callous and critical. Lies that make us blame God and believe that He doesn't have good things for us. Lies that He doesn't care. Lies that He is a bad option. Lies that the ends justify the means. 

The harder I press into God the harder Satan presses into me. "No surprise" that the exact opposite of my prayers happen instantly because Satan wants my eyes off Jesus, or on Him in the wrong way. 

I thank God for revealing that truth to me. And I pray for well trained eyes to see that when it happens and a well disciplined faith to accept it as truth. And I'm thankful that the year of falling is over.