Thursday, August 30, 2012


Taking the little one to the doctors today.

Nothing serious, at least not that I'm aware of.
Just a low grade fever for the past few days.

Have a great Thursday one and all.

Tuesday, August 28, 2012

Aaaaaaaaand, Bam!

It just hit me. Just as I rolled my eyes and got up from the chair because Theodore was fussing again. I was wondering when it was going to be my turn for a break. When do I get the chance to stop answering questions and breaking up arguments and disciplining and rocking to sleep?

And then (unfortunately, but fortunately) it hit me. 

It's not about breaks or time outs. It's not about the number of minutes a day I get to do nothing. In a previous post when Theodore was extremely ill I quoted, abbreviated, from a book that is special to my heart:

Cheerfully and gratefully I lay my life and all I am or own at the feet of Him
who redeemed with His precious blood, 
engaging to follow Him,
bearing the cross he lays upon me.
This is the least I can do
and I do it while my heart lies broken and bleeding at His feet.
-Stepping Heavenward

Do I only lay my life before Him when my child is close to death? What about the everyday? How could I give that up gratefully then and not now? 

Let me tell you something important:

Comparison kills.

It kills, people. Discontentment, selfishness, pride, the sense of inconvenience- they destroy. I've seen it. In others lives.

In my life.

I'm truthfully ashamed that it takes my son almost dying for me to walk in that. To live right where I am. Cheerfully and gratefully when my kids are fighting. Cheerfully and gratefully when hot chocolate spills all over the tablecloth. Giving up each moment of my life, recognizing it as not my own. I can live EACH day surrendered. I can live EACH day thankful. I can live EACH day in peace. 

And it doesn't matter whether anyone around me is
because it's not up to them.

I read a card many years ago that said something to the effect of: the grass is always greener on the other side, so you go there and find it's a sewer mound. 

Don't wait to live joyfully. Don't wait until you almost lose a child to live surrendered. Peace will not come any other way. 

Don't choose the sewer mound.
And just some proof that I do get the chance to put my feet up sometimes:

Although, trouble does usually follow.


Friday, August 24, 2012


That is the name of the game this year. I'm talking full blown, easy, ready made, taking it slow simplicity. And I have a few ideas on how I might make that happen... you know, if I actually play them out. Last nights post was all about how my day was anything but simple. Today is a new day. Thus the simplicity begins. I hope.

Starting off on a good note, I am so happy to be snapping pictures away on our camera capturing those wonderful sweet moments of the day. The moments unlike when the dog wakes me up at 4am because he has somehow managed to pull the shotgun case (with shotgun inside) onto his bed and open it and it's now taking up all of his space. Don't ask me how that happened, I honestly don't know. It was impressive though. Albeit, a little unsettling. 

Here is how a few of our days have been spent.

 Such a techie. Ben, look away. This isn't what you think. He absolutely is not holding my phone.

Clothes picked out by children.

Cats sleeping.

Standing!!!... kind of.

Kid playing with dog toy.

Dog playing with kid stuff. And acting soooooo innocent.

Pop's glasses.

Emma's specialty snack: peanut butter and cake sprinkles.

New equipment.

Being adorable.

Bedtime fun.

And that is that, ladies and gentlemen. Focusing on the good.

Thursday, August 23, 2012


Finally sitting on the couch. Cat, belly up, sleeping next to me. Dog at my feet. The same dog who almost knocked over our very-expensive-couldn't-afford-to-buy-it-again-(couldn't-really-afford-to-buy-it-the-first-time) air purifier. Kids upstairs waiting to be tucked in. Smallest kid hooked up to his vent. Just waiting for the nurse. Feet up for the first time in what feels like 1,029 hours (in the words of Emma). Lights dimming each time the air conditioner kicks in. Almost silence. 

Today, oh Today, you persistent demanding thing. You were a pain in the butt at times. I, like many of you, hit the ground running and have not been able to stop until falling dead asleep from exhaustion in a nice comfy cool welcoming bed. Or, in my case, our awkward-for-the-neck couch. I'll take it. Today was the kind of day where you feel pretty accomplished but wonder if it was worth it. A day when you feel on top of everything until mid afternoon and you suddenly hit panic mode because all of your accomplishments have left the house dirtier then when you began and short on time for dinner. But, I suppose, it did leave three freezer bags of homemade pizza sauce and.... I'm sure there is something else lasting that I did....

The kind of day that has left work done that no one will see. Things will unknowingly be taken for granted- things that kids and animals count on. The kind of day, where up until that mid afternoon panic attack, I responded kindly and calmly to my children. The kind of day that leaves me regretting words said and quick responses made. 

Today I am thankful that the nurse is running a few minutes late so I can apologize to my kids when I put them in bed. Today makes me thankful for an ever patient Redeemer; makes me thankful for family; makes me thankful for friends and quiche and a million and a half clothes bags to organize. Today makes me want to try again tomorrow. But it also makes me want to sleep until 5pm. Neither good nor bad outweigh the other so there's a balance.

Today had me really wishing the woman in Proverbs 31 didn't have to rise early to get everything done. Can't a sister catch a break??

Here's to tomorrow.
Here's to the same but different.
Here's to sleep.
To duties and play time.
To husbands and kids.
To dogs (....and cats...)
To forgiveness.
To my Provider, my Portion, my Supply.



Wednesday, August 22, 2012

Oh Susanna!

This is quite possibly going to be the most annoying blog post ever. Enjoy.

I said in an earlier post that the majority of our time at the hospital was spent singing songs to Theodore. Seriously at least 65% of the time that is what we were doing. So it's no surprise that I have these songs rotating through my mind constantly. The following is my effort to get them into your head and out of mine!

Thus the list begins:

Oh, Susanna!
She'll be coming 'round the mountain when she comes.
Yankee Doodle.
Twinkle, twinkle little star.
I've been working on the railroad.
Clementine (which, if you didn't know, has some seriously disturbing lyrics.)
If all the raindrops were....
Jesus loves me.
Row row row your boat (in round form, of course)
The alphabet.
Oh little playmate (Grandmom's pick - not mine, but it would be the one that got stuck in my head above all others.)
How much is that doggy in the window?
Do your ears hang low?
Jesus loves the little children.
Sally the camel.
Old Macdonald.
Mary had a little lamb.

Luckily for you that is all that I can think of right now. Not to mention, Happy Birthday. I'm sure I'm forgetting at least a few but maybe this means that they are slowly cycling their way out of my brain. I can only hope. Also, I will not say that we sang at least half of these in harmony. This is what my life has sunk to.

I wouldn't mind you letting me know what some of your kid songs are because it's good to keep some in the queue - just in case. 

Totally unrelated- I really wonder when my dog will start peeing like a real dog and lift his leg instead of drenching his front two paws each time.

Also, I'm really excited to get the camera out and get some good shots instead of the cell phone gritty-ness.

Enjoy your day singing!   

Sunday, August 19, 2012

Stank technology.

I seriously hate technology. Except for, of course, the stuff that saved my sons life. But every thing OTHER than that I hate. From phones that randomly shut themselves off to computers that tell me I'm putting in the wrong password to things that tell you every ten minutes to update, I'm swearing off technology. 

No, I'm not. I think taking Theodore to Baltimore in a horse and buggy would quickly become trying to say the least. Also, keeping him alive would be difficult. But I do appreciate more and more the technology free aspect of the Amish. Plus their food. And their quilts. 

Today has been...... okay. It really has. It's just the million little things, mostly but not limited to technological issues, that have driven me crazy. It's the fact that there is no food in the house. (The kids had one tortilla with peanut butter and a small bowl of dry cereal for breakfast.) It's the flour - the completely sealed unopened flour (two bags)- that have those dirty little mites in it so I can't even make bread. It's the phone that doesn't ring loud enough. It's the stinking trach collar that will not for the life of me stay over Theodore's trach. It's the freezer burned fish sticks. It's the air purifier in the middle of the room. It's the stinking mouse who manages to survive with THREE cats in the house.

I'm realizing now that the bulk of that was not technology specific- I think that just must have been what put me over the edge.

Bright side? Idaho is back! And he is as big as ever. Theodore is still doing really well. Everyone is sleeping in their own rooms. I'm almost done the laundry. 

The bright side list was a touch smaller than the other one. I definitely didn't see that coming so now that it's written out I kind of wonder how my day was okay at all. But I did manage to keep the perspective today that doing normal things is just going to take a little bit longer than it would someone else. Instead of just moving a baby I have things to unplug and rearrange and that's just the way it is. Today I was able to remember that and it made things go much more smoothly. It was real better. I have to let you know that I'm not an idiot and am aware that saying 'real better' is completely incorrect. It just so happens that a US Olympian stated exactly that after competing in an event. Go USA- we are real better at education.

Unfortunately for me I now have to somehow keep this dog from barking at the cat so Rambo can stay sleeping. I'm off to try to accomplish that. I look forward to bed in a few hours. 

Oh, and I guess I forgot to mention that we are back in our own house. We got here yesterday afternoon and things are going swimmingly. Except for all the negatives I mentioned before....


Wednesday, August 15, 2012

What's going on??

Not having a convenient internet connection has really cramped my style and in turn, left you all out in the cold. Which may not be that disagreeable to most of you considering our recent heat wave. So for the second time, here is a much needed update.

We are home! Kind of. If you consider the Eastern Shore home, then yes, home we are. And it was a quite a sigh of relief to be here- hopefully to stay. Especially with views like this:

You don't really get that in the city. A concrete jungle is a most accurate description and I'm sure that some prefer that. I, however, will take green anyday. 

Being at our actual house is another story all together. I said before that Theodore tested negative to the allergy tests they ran. That left us with getting our house and equipment tested for anything that might be irritating his system. What did we find?? I really couldn't tell you. Not specifically anyway, but both the house and his equipment were extremely high on the 'particulate' spectrum. Meaning molds and the like. Why this hasn't bothered Rambo before? I'm not sure. Maybe it's all new. Maybe he still didn't fully recover from when he was first really ill with adeno virus in May. Maybe it was something else completely. Maybe it was paired with a pulmonary embolism. Who knows. The point is that now that we know it's there we can't bring him back until it's fixed.  It's not the healthiest place for a normal person to be so someone like Theodore really shouldn't be there.

Again, why we've all been there for years and Rambo the past year without getting ill I don't know.

Ben has been tasked with doing/redoing all of the insulation in our basement as well as killing the mold and waterproofing the whole thing. While he's working night shift. Fun times. Thankfully, his brother was able AND WILLING to come help knock out a good portion of the work. Thank you, Eli. As well, we have a super effective super expensive air purifier that will be kept in Rambo's area to, you know.... purify the air... Just another thing to keep plugged in an running and tripping breakers all the live long day. 

We have yet again descended on my parents home who have willingly agreed to let us stay free of charge :) It's a mess. There is stuff everywhere. Thankfully it's only temporary. Hopefully. 

And on the bright side, our second longest, most costly trip has come to a close. (I hope.) We have spent 79 out of the last 85 days separated, away from home. Bye bye summer. 

Rambo is 'home' on a vent at night to help his lungs recover over the next several months. We have many appointments in the next few weeks and a couple of new meds to give. BUT he is amazing. He is growing and happy and we all love him. 

Here's a few pictures I wanted to get up before... more to come I'm sure.


Wednesday, August 8, 2012

Its's about time.

I know that an update is desperately needed, but I have very little time with internet access. Hereis an updare in a million words or less:

We are no longer at Johns Hopkins. We have found ourselves yet again at the precipice of hell: Mt. Washington. Okay, thats maybe a little harsh. I've shared my feelings about this place before and don't need to rehash the past. I will just say that we put up a darn good fight but push came to shove and we basically got steamrolled.... right out of Hopkins. Stinking insurance...... or so they say.

I digress. Rambo is doing wonderfully. In fact, he is learning new skills and his strength finally appears to be what it was. We have completed our two days of vent training at home and several times I have given him the shot he will be receiving twice a day for the next several months. Just call me wonderwoman... or Amanda... or lady who likes to toot her own horn. Although, I can't really toot my own horn too much considering the fact that we are where we are. Anyway, you all are letting me digress once again. It's the spaghetti in my brain.

Where was I?

Ah, yes. We are getting super close to going home. Like, we should be headed there early next week. I know I've said it. It doesnt matter - Rambo is going to do what he wants whether I say it or not. He has proven that time and time again.

My mother in law is still with me, who I should say, has also completed the vent training and given the shot. The kids are still with my parents who graciously haven't kicked them to the curb yet. In fact, the kids had a grand time with them last week at camp. In an RV. 5 people in an RV. 3 of those being kids. Not even THEIR kids. (I love you mom and dad.) And it was all fun and games until Israel accidentally ran across a yellow jacket nest and was stung over 10 times.

Awesome. If it's not one thing.....

We also got the results of Rambo's allergy tests and the results are in....... he isn't allergic to anything. Not dogs or cats or pollen or molds (the ones they tested him for anyway). So that leaves us back where we started with not knowing what caused all of this. (Just thinking out loud here, but I still wonder if it was a pulmonary embolism. It just seemed to fit so well. Especially considering the fact that he now has two clots and has never had that issue before...) I guess we'll never know and that's just the way it is.

I, again, have pictures to put up but that will have to wait until another time. Mt. We-want-to-make-things-as-difficult-as-possible has no internet for me to hook into and right now I am back at the Childrens House ready to relax and sleep. I'll try to get them up tomorrow. In the meantime, remember to look both ways when crossing the street. And be careful, the yellow ones don't stop.