Rambo's Rampages...

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&#

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, o

...to be busy. Wait, that's not right. ...to 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 leave

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 minute

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.  

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. :) 

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 n

A few pictures from Halloween. Tangled of course. Tinkerbell and a mutant, mad doctor too. Maybe Tinkerbell isn't as innocent as she seems..... Muahahahaha. 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="">

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. 

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. 

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

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

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 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. 

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

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 schoo

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

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.  Yikes.  So now, moving on so that I don&

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 hi

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 r

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

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. 

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.

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.

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