Monday, December 30, 2013


It's the same every year.

At least it feels the same. 

Bidding good riddance to the past year. Don't let the door hit you in the you-know-what.

Bigger and better things are in store for me (hopefully).

Then those promise filled days turn into frustrating weeks 
and disappointing months and depressing seasons.

And those bigger and better things never come.

And this time you're telling the year to kiss you in the you-know-what.
Forget the door, you'll take care of it yourself. 

And the cycle continues.

And I know that I'm just this jar of clay. This breakable, fragile, jar of mud. But aren't I supposed to be filled with this.... treasure? This intangible, sustainable, fulfilling treasure? Because it doesn't feel like it most of the time. I don't feel treasure-filled. My jar is doubts and depression and anxiety and all that stuff I thought was supposed to be worked out in college like self esteem and insecurities. I'm not supposed to be crushed but I'm crushed. I'm not supposed to be despairing but I am. I'm not supposed to be destroyed. I'm not supposed to lose heart.

My broken pieces are supposed to be growing into beauty but they are weeds instead.  

Where is this treasure? I am only a jar of clay.

 "But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us."

Ah, yes, I am. I am only a jar. Thanks be to God it isn't me who has to fill up the jar. 

But I still try. And I always end up with weeds instead of flowers.

Somewhere along the line when I don't like what has come my way I start to lose my way. I start. And those buds that would blossom into beauty given time break off. They die. I kill them. 

Because I know better. And months later when my jar of clay is filled with myself and I'm stooped in depression and muck I say that I don't know what happened. I don't like that I'm hard pressed. I don't like that I'm afflicted. I don't like that I'm crushed or forsaken or despairing. 

I don't know why I don't have any flowers. And I don't like it. 

Where is this treasure?

"I have said these things to you, that in me you may have peace. Ithe world you will have tribulation. But take heartI have overcome the world.” 

We will face tribulation. We will be afflicted and struck down. But IN HIM we will not be destroyed. In Him there is beauty from the brokenness. The power belongs to God, not us.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 2 Corinthians 4

(FindING and livING out all the important thINGs in your life.)



Take a breath... it's over.

It's been a while. I apologize. I'm sure this season has been busy for all of us and the time to sit down and type a few things... well, it never presented itself. I had all these ideas of grandeur of getting the house put together and all those little chores that never get done on the regular were going to be fulfilled and.... yeah, that didn't happen. The first two days of our Christmas vacation were great. Junk drawer cleaned, laundry DONE, shoe bins cleaned up and organized, etc. Now we are down to our last week of no school and all that has to be redone including all of the normal stuff that has been put off and all those new wonderful toys to be put away... somewhere.... 

I guess I should start by saying that we celebrated Theodore's 3rd birthday!!! And by 'celebrate' I mean we all said "happy birthday". No party, no cake, no presents. I don't mean to sound heartless, but it just wasn't happening this year. He didn't know, people, okay. And why put more stress on ourselves about planning something like that amidst the busiest time of year when he can't even eat cake? We love him. We reminisced. We thanked God for him again. And we called it a day. 

And let me tell you something, this 3 year old is getting big!! Walking has still not been attained. But he is able to, with some patience, get balance and stand on his own for a few seconds. And instead of falling over he semi-gracefully just sits down. He's learning more signs and we just keep adding to our list for communication. More, song, momma, daddy, head, book, out, hi and bye- are all signs he does regularly. Please, thank you, good morning, eat, no, open, help, dog, cat, sleep, bed, bath, careful- are just a few that are in our repertoire. He desperately wants to communicate and we are trying to help him figure out how. 

Theodore also seems to be going through a rough stage. Pulling hair, slapping faces, uncontrollable swinging of hands, scratching, bouncing and moving during a diaper change. It's not super fun.

Christmas was amazing. We awoke to HUGE bags of presents for the kids filled by a wonderful anonymous donor who heard of our family somehow. I must say that we celebrate Christmas because of Jesus, but my heart was a little saddened that we only had two presents under the tree for each kid. God had that under control apparently because we had to do our Christmas morning on Christmas Eve morning or we would not have had time to open everything. God is good. And so is that lovely lady who 'adopted' us. Thank you! And there was a 'little' something in there for me and Ben to enjoy as well!

Back to Theodore... we are still working on schooling. It looks like he will be attending school. We have met the nurse who will be with him for transport and the entirety of the day. She is wonderful. Thank God! Now I have to get together social security cards, birth certificates, one of my kidneys, and part of my heart to officially register him for school. (I guess there's a lot of school fraud??? I don't know.) We should be having our final meeting sometime this month and then it's finally time for mommy to have a heart attack as I will be watching him GET ON A BUS AND LEAVE!!!!! My throat is starting to tighten just thinking about it. I'm gonna need to make sure I have a full prescription of anxiety meds before this happens. 

My plan is to be more active on here. I've said that before I know, but I really mean it this time. We'll see what happens. In the meantime, Merry Christmas a little late, and Happy New Year!!     

Sunday, December 8, 2013

Tis the Season... be busy. Wait, that's not right. be stressed? 

This Christmas season is so short. I feel like I've been going since the day before Thanksgiving and I haven't stopped yet. And these stinking nurses are about to ruin my Christmas spirit. 

Could I share a short and sweet nursing story with you? Okay, well I would if I had one. But, lo and behold, I don't. Surprise, surprise. You don't have to feel obligated to read, you really don't. But these stories just keep getting more and more unbelievable that it's hard not to share out of sheer amazement.

One of our wonderful consistent nurses (we have 2 wonderful consistent nurses) is on vacay. Not really - she's on a mission's trip to Nigeria, but whatever. (If its not your home I consider it vacation unless you're on active duty. That's just the way it is.) She is out until the end of January which I'm sure I have shared in prior posts. I think. Anyway, she is gone. Which leaves us short. So here are the fun situations we have found ourselves in.

Numero Uno:
Sunday night *technically Monday morning*12:30am (under the assumption my nurse is coming because no one has called to say different) calling the company to find out where my nurse is. 12:45am them calling me back after needing to find her and telling me that she is a no call/no show. Awesome. Thanks for that. 

This is after not having a nurse Thanksgiving night- which I knew was happening so that was fine. Everybody needs a night off once in a while. But twice in just a few days of each other always stinks, especially unannounced. 

Numero dos:
We are told we are having a new nurse come for the day. It was expressly stressed to us that he would be here an hour early for orientation. A half an hour after he's supposed to be here I call to find out where he is. "Stuck in traffic" they say. Like always. "But he'll be there in 15 minutes, he's on the Bay Bridge." 

Uhh... unless something drastic has happened with geography there is NO WAY you're going to be at my house in 15 minutes if you're on the bridge. An hour and forty minutes after he's supposed to be here he shows up. He just walks in like it's no problem. "Um.... you were supposed to be here at 9am. It's 10:40. What happened?" To which of course he answers a bunch of mumbo jumbo and traffic and Easton and GPS and blah blah blah. Finally, FINALLY, after several minutes he admits to plain and simply just not wanting to come for orientation. Apparently the fact that he's been doing home health for a long time is supposed to make me instantaneously comfortable with him caring for my son. Not to mention the fact that even if he wasn't supposed to be here for orientation he would still have been 40 minutes late! 

We had plans for the day that totally had to be changed, and even though he's 'super nurse' we stayed around for an hour orienting him!! (50% of the time was taken up with HIM asking us questions.) Hence the reason he should have come for orientation!!!!! 

So despite a few qualms and with much urging to call us and programming our numbers into his phone, we head into town to accomplish a few things but decided to stay close to home in case anything happened. After a few hours we head home early. As we neared the house I got more and more anxious with that feeling in the pit of my stomach that I did not like this man. 

Thankfully, Theodore appeared fine and no worse for the wear but that feeling didn't wane. We decide to send the nurse home early. Thank you, please never come back. We are sending him home 2 hours early and when we go to sign his time sheet he claimed the amount of time he was supposed to be there - 10 hours, not the 7 1/2 he actually worked. This guy is honest to the core. Yes, please come into my home and watch my disabled child again. I think not. He does eventually change the time sheet at our request but then asks some sketchy questions about what kind of insurance we have and it just got weirder by the minute.

When I call the next day to say we would not like to have him back they had nothing to say. In fact, they almost seemed bothered that I dare say he lied. It was a mess.

So now I'm here at another Sunday night and am 99% certain I am nurse-less once again. I'm not even sure that we'll have any day time nursing anytime soon. It's a good thing I love this kid.

But, hey, tis the season, right?? I'm hoping the cheer and joy and jolly-ness come and stay before Christmas has come and gone.   


Wednesday, November 20, 2013

A probably-not-so-good thought.

I had a thought just occur to me as I sat eating my Fruit Loops (yes, 'breakfast' at 11:45). I wish now that I hadn't thought it. It's one of THOSE thoughts, you know. The kind that should be welcomed but instead makes you uncomfortable and frustrated that you even had it. Because now that you've had it your only choice is to abide by it. I suppose you could ignore it, but that would only bring guilt and that nagging feeling every time you did. 

Ugh. I hate those 'self improvement' thoughts.  

First of all, you can thank my kids for this thought because every day - EVERY DAY- they complain about having to unload the dishwasher. It never fails. And every day it takes them about 3.5 minutes. They complain longer than it takes them to do the task they're complaining about. And what do I say??? "It didn't even take you 5 minutes!"

BOOM. Conviction like woah. 

**I really shouldn't complain about anything that takes less than 5 minutes.**

Stop! Stop reading now!! Close your browser and act like you never saw this!! You will have no guilt if you STOP NOW! :)

At first I thought this was a novel thought. "Oh yeah, that's a good rule to live by." 


If I were to stop complaining about everything that took less than 5 minutes that would eliminate like 98% of my complaining. That means I would have, literally, almost nothing to complain about. 

That. makes. me. squirm.

You can laugh at me, but that probably means you're not being honest. 

If I stopped complaining about stuff then that means I'd stop validating my self pity party. I'd start realizing that almost all of the stuff I complain about isn't that big of a deal. It's not worth the air it takes to complain. I'd start realizing *gasp* my life isn't that bad.

I told you to stop reading. 

Why does this make me so uncomfortable?? I can only speak for myself when I answer this: selfishness. Plain and simple. 

So what am I going to do with this revelational (is that even a word? Relevatory maybe? I don't know...) thought??? I'm still deciding :) 


Saturday, November 16, 2013

Hey, buddy...

You're doing it wrong.

Theodore has officially broken his bouncer. Bro-ken. The actual gears (or whatever) have been stripped (or whatever). Look, I'm not an engineer, okay. Basically, it doesn't work. But it's the only one we have so he still sits in it, climbs in it, lays his head in it.... And you should see him put himself to sleep in it. He's so peaceful when he sleeps, but getting there is the exact opposite. He sits forward as far as he can and literally throws himself against the back. You'd think it would hurt his head but he will do this over and over again until he just passes out.

Actually... now this has me wondering if he is, indeed, passing out or just 'passing out'. Hmmmmmm. Maybe I shouldn't let him do that any longer...

Whatever. It keeps the peace.  

Monday, November 4, 2013

Booger butt.

This little booger butt has learned a new skill. When I saw it I said, "Yay!" and "Oh no!" at the same time.

He can climb onto the couch. Or the ottoman. Or the loveseat. Or anything that is that height. 

He cannot get down carefully on his own. 

This is going to be interesting. 

My heart is so happy but my mind is thinking "How in the world am I going to keep up with this???"

He also has a new favorite game: open and shut momma's mouth. He will do this forever if I let him. It's adorable. If I want to keep him off the furniture I can let him play this game, but neither of those options get anything else done in the house. Haha. 

Pray for us. :) 

Sunday, November 3, 2013


A few posts ago I said that we had done assessments for Theodore and he was averaging in the 18 month range developmentally.

I was wrong.

Wah wah wah.

The only area where he is even close to 18 months is socially. Everywhere else he is 10-12 months. 

Old picture. I am not blonde currently and Theodore is not that chunky.
We're all very upset. Okay, not really but I feel a little deflated. I feel like he's been stuck in this range for-ev-er (imagine the boy from Sandlot saying 'forever'). It's true that his skills have been honed and refined, but he hasn't progressed so much in the gap between his skills and his age. 

We went to the school and saw his classroom and now we are waiting for this big meeting where EVERYONE comes and talks about their assessment and it's all formal and weird and we basically decide if the school can make a plan that provides all his needs. We shall see. If, for any reason, the school feels that they cannot meet his needs safely in the school setting then it will be done in our home. I'm open to either option, God knows best.

Now it's time for me to go eat dinner leftovers for breakfast. It's how I do. Enjoy the last day of the weekend! 

Saturday, November 2, 2013

Halloween and what.

A few pictures from Halloween.

Tangled of course.

Tinkerbell and a mutant, mad doctor too.

Maybe Tinkerbell isn't as innocent as she seems.....


And since some of Theodore's therapists gave me a hard time about not having a costume for him....

I hope you're happy with yourselves, therapists. 


And last but not least, we celebrated my 30th birthday! Woot! And I can honestly say that even though there wasn't one big party (it was little things all throughout the week) it was my BEST BIRTHDAY EVER. Seriously, I will remember this one forever. <3 font="" nbsp="">

Sunday, October 27, 2013

Tomorrow tomorrow tomorrow

Tomorrow is a kind of big day. We go to see the special ed classroom where Theodore will be attending school *IF he attends school* and watch what some of the class time is like. Then it's off to chat with the principal and to ask any and all questions we might have. 

I'm feeling more and more relaxed over this whole school thing. I'm not feeling in desperate need of him going and I'm not worried that he won't. I'm actually feeling pretty darn calm about the whole thing. I would love for him to get out (get AWAY) but I also know that no one knows him and can watch him like me. It will take a lot of trust to get him out, on a bus none the less, and into a classroom for several hours a day. But, oh man, could I use it. 

He's fulfilled all the assessments so far: occupational therapy, physical therapy, speech and language, and the general special education one. And, although, there has been no 'official' ruling he has certainly qualified in each. 
Just a quick note of clarity: 'qualifying' in this situation is showing a 25% or greater delay in these areas. Duh. Yes he does. Check that off the list.

However, he HAS had improvements in the last six months. In his fine motor and cognitive skills he has improved, more or less, about 4-6 months across the board. He is developmentally averaged around 18 months although it can range anywhere from 12-24. Slow and steady for this boy.

He is using his walker a lot and he would use it even more if it weren't such a pain for me. But his cords only allow him to go so far and our rooms are only so big and he doesn't know how to turn around..... excuses, excuses, I know, I know. 

As far as his health, he's looking good! We saw the pulmonologist the other day and after waiting for only an hour an 20 minutes past our appointment time (not to mention the 20 minutes we were there before our appointment) she saw him and said he sounded wonderful. Woot! I'm 100% certain that no one has ever said his lungs sounded wonderful... or even good. So that is great news! He will have a chest xray in the next few weeks and we are going to keep a close eye on his oxygen levels because it is appearing that his need is increasing. Which wouldn't make a ton of sense if the lungs are in great shape so we are going to try and weed out all the variables to find out if there is anything really going on or if it's more circumstancial. Let's hope for the latter. There are no other signs of anything being wrong.

Except for today where his trach acted as more of a hose emptying out tons of water from his lungs. No exaggeration. It was like a constant leaking. Not sure what's going on there but lots of coughing, lots of suctioning, and about 4 clothes changes. I think it's just an easy infection but we'll see, as always.

He is adorable and busy. And I love him. 

I leave you with napkin head.


Tuesday, October 15, 2013

You'll shoot your eye out.

I mean..... is there anything else to say? He is stinking adorable. A much cuter version of Ralphie, if you ask me, but still the similarities are there. 

Tuesday, October 8, 2013


You know those days where you feel like you left your brain in bed?

Where even the planned things surprise you?

Yeah.... it's been one of those days. Actually, if I'm honest it started yesterday. Simple things. Simple stupid things. Like Theodore's incessant coughing throughout the day increasing to the point of constant and you go over in your mind, out loud even, the checklist of things to check and try to help him, and you forget the most basic thing that makes the difference. 

Like setting your alarm for 6PM instead of a.m. and waking up with a sudden start 1 minute before you hear your neighbor pulling in the driveway for your morning run.

Like knowing and forgetting Theodore had an equipment company worker coming today.

Like knowing and forgetting he had a speech therapy appointment directly after that.

Like staring in a mirror for 5 minutes at a necklace with a lower case 'a' on it trying to make the 'a' face everyone correctly.

And then, just now as I type having it fall off because I didn't clasp it correctly. (Now I have to figure it out again... maybe I just won't wear it.)



I am out of energy, out of my mind, and apparently out of luck. 

I need a nap; or a drink; or both. I think maybe I just need this day to be over and to start a new one... right after that nap and gin. 

Thursday, October 3, 2013

Summit of Wannahockaloogie

Ruthie just called Theodore "Shark Bait". I don't know why, but it does seem apporopriate. 

Life lessons of Finding Nemo... 

Monday, September 30, 2013

Oh boy Oberto.

I never really thought about the fact that Theodore would have all the issues he has AND be a toddler. But let me tell you, he is full swing in toddler mode. Simple things like changing his diaper, suctioning him, changing trach ties have suddenly taken a turn for the impossible. 

Hands everywhere, turning over, moving, pushing me away, reaching for everything..... ugh. I have a toddler on my hands.

I say this often, but I thought I was busy before. I seriously can't take my eyes off of him. Needless to say, Theodore Relief Brigade (as my aunt and uncle dubbed it) is open again and anyone wiling to help with ANYTHING is welcomed. Seriously. With school back in full force and Theodore in full force... life just got real. Again. 

Theodore, on a whole, has been doing quite well and his skills have taken off as I've said recently. His health has been a little on the sketchy side. He's been fighting something off for a week or so... not sure if we're winning or losing. He needed his vent last week, he's getting suctioned like crazy, he's had a low grade fever for several days.... all those little things that add up to make a big thing. But we're doing our best and hoping that it doesn't turn for the worse. His mood hasn't changed and that's always a good thing. Other than having a few super clingy days, he's been his happy little self. 

Our nursing has been heinously sporadic so that makes it hard to plan anything. One good thing about night shift is that Ben has been able to cover any nights he is home and no nurse is available. Unfortunately, for this fact alone, he is now finished with night shift for a while so I'm on duty.... boo. If night time nursing were the only issue then that would be one thing, but our day time nursing has been worse than night time. 

I guess this serves to make me even more thankful for the nurses who do show up continuously. 

.... I guess....

Anyway... school is in action without me, which essentially means nothing is getting done. I better go keep order.  

Thursday, September 26, 2013


He just got this walker today and he took off. I thought that maybe he would hate it, but that doesn't appear to be the case. I'm both excited and dreadful at the same time. Can you imagine this boy walking???? It's going to be insane around here. 

While he's out conquering the world I'm going to be looking for yet another place to store this space stealer. 

Wednesday, September 18, 2013

Here it goes.

I've been pondering something for awhile now and feel that this is the right time. It is with some regret, some relief, some sadness that for now I am laying Rambo's Heart to rest. For now. 

Some of you may be saying, "Didn't you do that a long time ago considering absolutely nothing has been done with it in forever?" And... yes... that is true. But thinking about the 'next thing' has never stopped even though no real action has been taken in quite a while. There are many reasons I feel this is the right time for this. Our core group has been taken different ways in life (like Kentucky, for one!!!!) for the time being. Kids growing up, school, work, life. It can't be poured into right now as much as we want, it needs.  

Our heart for Rambo's Heart is still there. And, again, I stress that it is only 'for now' because I do believe there will come a time where it will be just the right thing for just the right people. As it already has been. Let me assure you that everything that was earned or given or gifted to Rambo's Heart was used entirely for families with children in hospital situations. Several people were blessed by your graciousness. 

Rambo's Heart still exists. It's still there if you want to give, still going on in the background. But I felt that I owed you all an explanation of where things stood. Thank you to all who supported. :) 

Monday, September 16, 2013

Oh, baby, I love your ways.

So, this little man has just decided that he is going to take off. In the past two weeks, his list of skills has probably doubled. It's like he finally said, 'Okay, okay, I'll give you what you've been looking for,' knowing the whole time he could always do it he just wouldn't.

Now he is:

waving hello and goodbye

putting things INTO a container instead of just throwing them everywhere

understanding his relationship to the ipad (cause and effect). Now that he knows he can make it do stuff himself there will be no stopping him.

actually playing pat a cake and working on 'The Wheels on the Bus'.

I'm so proud :)

On a weird note, I just looked at wheelchairs for him. It feels strange. I never thought I'd be buying a wheelchair for any of my kids. I mean, really, what has this kid done that I thought I would be doing? It's not because we don't think he will walk, because we all do. It's mainly for transport if he goes to school and to make our lives easier when we are out. But it still seems weird. 

Now, I leave you with Rambo being Rambo. (playing with his suction machine)

Saturday, September 14, 2013

Let your bodies hit the floor.

You know that feeling you get when your nurse tells you that your son fell out of his high chair? 

Oh, no?

Consider yourselves lucky. It is a sinking feeling. 

But all that being said, he is okay. I'm not quite sure how he did it since he was strapped in. I should say that she is an excellent nurse. She really is. She takes great care of Theodore and always has. She had him in the highchair appropriately and she left for a quick bathroom break. When she got back she found him on his side on the floor. Of course, she screamed and cried and was FAR more upset than Theodore was. In fact, she said he was looking at her like 'What is wrong with you?' with a big smile on his face. 

I asked her to please keep him up for a little while to be safe just in case of a concussion. She didn't let him sleep for the next 6 hours :) She was so concerned, in fact that she never left his side again. By the time we got home he was so grumpy because all he wanted to do was sleep and she ran to the bathroom because she hadn't had another bathroom break all afternoon and evening. We really couldn't ask for a better nurse. Christine has been by his side and ours since the beginning and has seen him through A LOT. Just another thing to add to that list, I guess :) 

Theodore was not harmed in anyway. No bumps or bruises at all. He just keeps going, this boy. I guess if his bad heart and lungs aren't going to kill him then a stinking little fall from a highchair surely isn't going to do it either. Thankfully.     

Wednesday, September 11, 2013

The verdict is....

Drum roll please.......

The doc okayed him to go to school. Woot.

Okay, but that's just the beginning. There is so much that needs to be done between now and then. And SO much that Ben and I have to feel comfortable with and give a green light to. 

For starters he needs to qualify for the program (which he clearly does but he has a ton of assessments to go through before they can technically accept him). Then it's meeting after meeting of making his own personal education plan and getting all the doctors information to make sure they can meet all of his health needs and blah blah blah blah blah. And then after all that, we (Ben and I) still have to decide if this is the best route for him. If anything makes us change our minds then it's over. 

So I'm suddenly feeling a lot of stress over whether I'm going to like the teachers or the nurses or anything at all since I'm essentially handing him over for the day. 


So now, moving on so that I don't have a panic attack......

We met Theodore's new cardiologist yesterday, and I like him. He said his heart is far from perfect (obviously) but there was nothing alarming. Mild leakage out of both valves, stenosis (narrowing) in both valves, enlarged left ventricle, and enlarged aorta. BUT he feels completely comfortable seeing him only once a year. Woohoo! 

Pretty much good news all around. Makes for a happy (albeit slightly stressed) mom.   

Thursday, September 5, 2013

That's what's up.

We are officially into our second week of school and we are all still alive. Woot!

Summer has been quiet (thankfully) as far as sicknesses or doctors appointments for Theodore. That I did purposefully. I actually can't remember the last time I drove to Baltimore. I seriously never thought I'd be able to say that. 

Tomorrow we see the primary care doc who will give us a 'yay' or 'nay' on Theodore going to school this year. I honestly don't know what I will do if he says no. We'll cross that bridge when/if we get there, I suppose. And in December he has a meeting with the school system to make sure he qualifies and yada yada yada. You should see the literature I have been sent regarding this. I have some serious reading to do. 

Next week he has a cardiology appointment including an echo so we'll see if there are any big developments there. The hope is that there aren't, of course, but one never knows. 

He has still had random swelling of his left arm and leg. It is very noticeable but there is no sign that it is affecting him in anyway or is the cause of something more significant. 

Our nursing situation is getting a little more crazy. We've actually 'lost' 2 of our 4 nurses for the time being for medical or personal reasons. So securing a day time nurse has been a little more challenging. Which means that everything has been a little more challenging, but the nurses we do have really do their best to help us out. So, thank you!

The good news is that even with braces on his feet and patches on his eye Theodore remains 'happy happy happy'. 

Sunday, August 25, 2013


The crystal glass has shattered into a million tiny shards....

Theodore has been doing so well. I can't even remember the last time he used his vent. He's getting big, he's learning all sorts of new things, he's growing up.

But lately.... he's been coughing. A lot. Sticking his fingers in his mouth, gagging himself; at night he coughs and coughs and coughs and coughs. And that's 'it' for me. That is what makes me feel like my body has turned inside out and is shot in all directions like a shattered crystal glass. 

It only takes one. One coughing spell. One incident of gagging and me trying to stop him from continuing. One minute of fighting sleep from coughing. It's just the right tool used in just the right spot to tap the glass and ruin it. 

It's a nightmare. It's what causes me to completely lose my composure. It brings me to my knees in agony. It keeps me from seeing any good possibility within days because this one incident has ruined it all. Anxiety shoots through me and I act ridiculous. It literally makes me wish I could go to bed and not wake up just so I don't have to deal with it anymore. Any and every bad situation I can think of is all I see. There is no half full glass. There isn't even a half empty glass. There is no glass at all because it's broken all over the floor. 

Maybe that seems dramatic. I'm not saying it's pretty or right. I'm just saying it's the way it is. There are a lot of dark corners in my heart, I'm finding. Even my son, whom I love desperately, can cause me to see only red in an instant because of something that he can't control.

Yeah, I know it's not a normal situation. I know we deal with more than the average person (maybe), I know that it's not just simply one coughing spell that we are dealing with. But I'm still not proud of the way I act- it doesn't excuse me from dealing patiently and lovingly. And quite honestly, it's a pain in the butt. I really don't want to get anxious and uptight with my mind running a million miles a minute thinking about how our entire first week of school is now going to be awful because of one cough. 

I'm thankful that those dark corners are being exposed and hope that Light can be shed there to stay. 

The mouth speaks out of that which fills the heart. Matthew 12:24

The heart is more deceitful than all else and is desperately sick. Jeremiah 17:9

Heal me, O Lord, and I will be healed; save me and I will be saved for You are my praise. Jeremiah 17:14  


Wednesday, August 21, 2013


Yeah, I made it up. It's okay. Just go with it. 

Our final week of summer is quickly coming to a close and it hasn't exactly gone the way I was hoping. We've had more nurse staffing issues lately than we have for quite a while which has made our last week be quite uneventful. 

Maybe that's a good thing. 

In better news, I forgot to take the trash to the end of the driveway today and only remembered because I saw the truck when it was next door. I didn't have enough time to get it down there and figured another week would just have to go by. But that wonderful trashman, whoever he is, actually walked up my driveway and got it. 

Bless you.

I had so many things on my mind and now can't seem to produce another productive thought other than the prior two. 

I should probably just leave it at that. 

I'll leave you with just a couple shots of the cute church next door. Because it's so pretty when the sun hits it just right. Of course, you want to make sure you're ready and able to get outside when the sun is hitting it just right or you end up a little past its prime like was the case for me. Day late and a dollar short. It's really my motto so I guess I could have thrown off the balance of the universe had I actually been out there on time. 

Wouldn't want to do that.   

Sunday, August 18, 2013

Mason jars

I've had this jar sitting around.

Just sitting around filled with doubts and fears and sorrows.

Reminding me every time I sit down what all those are.

Those things have been in that mason jar... in my heart... for too long.

So, yesterday, I set those things on fire.

"The removing of those things which can be shaken, as of created things,
so that those things which can not be shaken
may remain..."

"...Therefore, since we receive a kingdom which can not be shaken,
let us show gratitude,
by which we may offer to God an acceptable service
with reverence and awe."

"For our God is a consuming fire." - Hebrews

All that jar represented was created things.

Real things, yes.

Hurt and sadness and doubt.

Things, if I had my choice, I certainly wouldn't have chosen.

But all meaningful. Not unnecessary. Not meaningless.

All working together so that the unshakeable can remain. 

"Of course you can't see what it's doing! Don't look at what is seen." - John Piper

Because what is seen is all created- all momentary- all shakeable.

It's the unseen that is not shakeable.






Perfect Love.

Those are the worthwhile and not able to be created by human hands.

Those are what will remain.

So I took my mason jar filled with my heart and I emptied it. Allowing there to be room for what really matters. 

And I replaced my "I'm not crazy" lid with one of lasting value; one that shows gratitude.

And the first thing that goes in there will be thanks for that last jar. 

Thanks for the removing of the shakeable. 

Thanks for giving me what will remain. Forever.

Hopefully I'll need more than one of these jars. 

Saturday, August 17, 2013

Happy Links.

My close personal friend Ann Voskamp (just kidding... she's my friend but she has no idea who I am :) ) led me here today.

Check out these two pages: 

Welcome to Holland is short and sweet and insightful.

Indispensable is a little longer and beautiful and totally worth the read.

It all made my heart happy and feel a little less alone.

Monday, August 12, 2013

One hour.

It's not even 9 a.m. 

Theodore has already:

knocked over his humidity bottle spilling it

come undone from his tubes

chewed on a vinyl tile

knocked down a stool

broken a book.

He's been out of bed for less than one hour.

Saturday, August 10, 2013

Planes, trains, and automobiles.

Since the kids have been home from camp I haven't had as much time to devote to anything that isn't related to them. But we are starting to get back into the swing of things. 

Yesterday we had a nurse and got to take the other three to the movies. For the girls it was their first time. They, obviously, sat in the front row because how else can a kid go to the theaters without sitting in the neck breaking front row? 

We saw Planes. The kids have been waiting to see this since the first preview came out. And it was lack luster. I don't think they realized it, but it was not nearly as good as Cars and took about 20-30 minutes to get into it's groove. Then, even at that point, it was only 'meh'. But this isn't a movie review blog and the important thing is that the kids THOROUGHLY enjoyed themselves. If you're a parent though, I'm just letting you know......

Theodore stayed at home with the nurse and pretty much drove her crazy because he wouldn't take a nap. Welcome to my world. 

He's been, I think, fighting a trach infection and has been a little less than pleasant lately.

We're all enjoying the last few weeks of summer before *I hate to even say it* school starts. 

Just saying that deflates me like a pin in a balloon. It kind of makes my insides die a little.    

And, you know, I thought after 10 days at camp where the kids had little to no technology they would come home ready to continue in their use of imagination and creativity. 

I don't know what I was thinking. Keeping them off of anything that involves a screen has been like pulling teeth. But today we shall try again because we all keep trying like fools! 

Friday, August 2, 2013

A look back the not so distant past.

These are the days that I can't believe we survived.

The days where we could hardly turn around because of one thing. Well, two things, really that when combined make for a mess.

Tubage and rolling.

The rolling days. The days I generally refer to as living hell. And, man, he was fast. 

Thankfully those are behind us and we are quickly approaching the walking days. The only problem is that I'm still recovering from the rolling days, I don't think I'm ready for the walking days yet.