The Beast and Pretty Got My Camera

This happens about once a week. For some reason, I'm always surprised to learn that I'm out of camera memory. This is just about 1% of what they took with my camera. I'll spare you the agony of the videos.

The Great Scentsy Debaccle of 2009

The Beast plus Scentsy alone in a room. I don't think much more needs to be said about this. Do you? Really?

Busy, Busy, Busy

Who knew being the mother of five practically perfect in every way children could keep a person so busy? I know. Shocking. And, oh so shameful that I haven't had a chance to update my beloved blog in so long. Never fear, my faithful readers, (okay, so I know it's pretty much just me, but humor me). I am still here and am making a promise here and now never to neglect my blog again. Today's post won't include photos, but rest assured that they're coming.

Pretty Turned THREE
I don't even know how it's possible that she's gotten so big. But, according to the calendar, it's true. She's three now. We weren't going to tell her it was her birthday since her party isn't until next month, (she's sharing it with one of her favorite friends. Yes, we're cheap. No, we don't care how cheap we are.) but she found out. And she was so adorably excited to learn that it was her birthday. She ran around singing "Happly Buhday to meeeeeee" and explained that she wanted a pink cake and pink drinks and pink plates. Not a horrible order, right?

How do you say know to someone so cute with a request as simple as that one? You don't. Our friend, Samantha, made her a lovely barbie cake with a pink dress lovingly decorated with help from her mom and another friend (thanks, Reece!). I got some cheap pink plates, pink napkins, pink gift bags, pink princess presents, and pulled out the presents we'd been saving for her. We called one or two neighbor friends and Voila! Instant pink party. Not too shabby.

I Got a Handicapped Parking Pass
I have to thank everyone for the prayers and outpouring of love as we worked with Little Guy and his health issues. It was a scary time for us, but the love we felt made it completely bearable. He's home now with oxygen at all times. At home it's fairly easy. Well, mostly. The cat likes to chase his tubing. Figures. Going out, though, is another story. Dragging the oxygen, Little Guy, the other kids, the diaper bag, and the kitchen sink (okay, so I leave that at home, but it feels like I drag it, too) is a lot of work. The tank is usually the big one that I have to take depending on how long we're gone. And, when he starts walking, going too far will leave him fairly winded. So, I got a handicapped licence plate. I only use the privileges when Little Guy is actually with me, but I will say it's helped quite a bit.

A Funny From the Beast
So, the Beast is apparently actually learning something at church. And here I thought he just went to drive his teachers nuts. Nope. He's gaining knowledge. He loves to put things inside of bags, and I don't tend to pay attention to what junk he's putting in there. Well, that's not totally true. If a butcher knife, matches, or a little brother turns up missing, I'll check the Beast's bag. He took his bag to daycare with him one day and I'm told held an entire Sunday school lesson using the Book of Mormon he'd taken with him. From what I'm told, he made everyone come sit in a circle and listen to him. Silly kid. Think Ms. Buffy will convert? Ummm, doubtful, but good effort, Beast.

Yesterday, we had the following funny happen with him after I saw Marlene coming up the walk:
Me: Pretty, go see who's at the door!
Pretty: Okay, who is it?
Beast: (fully expecting me to answer in the affirmative) Is it Jesus?!?!?
When he saw that it was Marlene, he hung his head in disappointment and left the room. Weirdo. But I do love him, and I have to say that's pretty great faith to think that Jesus might show up at your front door at any second.

That's All She Wrote
I'm sure there's more fun and excitement that I'm not writing about today. The kids are awfully quiet in the other room, though. That either means they're dead or they're plotting to take over the world. Either way, I should probably check on them. Stay tuned until next time, my friends. There is always more to come...

Home Sweet Home

Little Guy and I got home from the hospital on Wednesday. I'm so happy to be home with my little family again. I miss Number One terribly. He's in Utah with the King's parents. I'm anxious to get him home so we can resume some sense of normalcy again...whatever that means anymore.

It's a little bit surreal being home. Honestly, I'm not even sure what to think about it. I spend a whole lot of time monitoring Little Guy's oxygen and planning what needs to be done, but never really doing any of it. Wonderful friends put my house together for me, so I don't have a ton to do, but it's so overwhelming to look at the whole picture and realize just what we've been through and will continue to work through.

The Beast, Pretty, and Snort are in an AMAZING daycare (Thank you, Ms. Buffy!) and they're so happy there. I hate having them away from me, but it's just going to be three days a week. I think it'll be a good thing for them. And it's loving and stable and secure. They need that right now.

The King seems a little more on top of his game having me home. I'm a lot more on top of my game being home, so I guess we're even. I never want to be apart from him for that long ever again. There is no more lonesome feeling than knowing your mate is so close but still so far away and you can't just reach out and let him hold you.

I have a full heart when I look around and realize just how blessed our family is. Friends have brought meals, redone our damaged home, come here and been away from their own families to help us out, prayed for us, fasted for us, and cried with us. There are just no words to descirbe the way it feels to suddenly realize just how very loved we are. They say times of crisis show you who your real friends are. I had no idea how many we really had. I can honestly say I'm not often speechless. Seeing how blessed we are leaves me speechless, though. There are just no words to describe it all.

So, I'm home. My kids are home with me (accept Number One, who will be home soon). I love them. I love sitting at the table going nuts trying to get them to sit still to eat. I love hearing them giggle together. I love watching Snort gently place his head on Little Guy's lap and stroke his baby fine hair while saying his name over and over and over. I love looking at them peacefully sleeping in their tiny beds at night and trying to imagine what they're dreaming about. I love knowing that I made them. For all their quirks and faults and silly little unqiue behaviors, I made them. Me. And the King. They are direct results of a deep and eternal love. And they're mine. And I love knowing that my Heavenly Father is there to help me love and care for and nurture them. I love knowing that He loves them so much that He can't and won't let me fail.

We have a long road ahead of us for Little Guy. He won't have it easy. But, really, who does have it easy? We all have a story, don't we? For Number One, it's a story of learning that being the oldest has its perks as well as its downfalls. It's a story of learning patience and surviving being the "guinea pig" for parents who haven't had any practice before him.

For the Beast, it's a story of beating the odds. It's a story of looking opposition straight in the eye and defying it. And, it's a story of learning his place in the world. In a world where "outside the box" isn't always accepted, the Beast will have to find a place for himself. And he will. That's what he does best.

Pretty's story will be one of learning to be the only girl with four brothers, of learning to be a lady and still play with the men. I can't really predict the chapters of her story, but I know she'll grow to have stories to tell.

As for Snort, the story will be one of overcoming life's obstacles almost from day one. For one with such poor eyesight, he always manages to see the beauty in everyone with perfect vision. His will be a story of love.

And then there's Little Guy. Living his story will cause him to build muscle. He'll be the one who tells the story of walking five miles uphill both ways in snow and ice in the middle of July. And it may not even be that big of an exaggeration.

The greatest part of being home is that we're all here together again. We get to pick up and continue living our stories together as One. I'm grateful for that. I'm grateful for the messes on the floors, the handprints on the windows and walls and tables and...well, you get the idea. I'm grateful for the noisy voices running from one end of the house to the other and the science projects happening in my toilet and bathtub. I'm grateful for these children. Little Guy being so sick and forcing me to be away from my children has reminded me how grateful I am.

And, so with all the noise and messes and fingerprints, it is what it is. It's home sweet home. And I'm glad to be here.

There is an End in Sight!

The preliminary results of Little Guy's biopsy are coming in little by little. There are some tests that will actually take weeks to get, but what we do know so far is that we have ruled out the really bad stuff. We'll take that. Honestly, after the roller coaster of the mass on his brain and always turning blue with no reason and the fact that we do know for sure that whatever he has is VERY rare, just knowing that the "really bad stuff" is not what he has seems like a real gift. Who am I to look a gift horse in the mouth, right?

We also know this is going to be a long-term illness for him. He'll have to wear his oxygen for several years to come, if not permanently (the results of the biopsy will tell us more about long-term expectations). We still have some out-patient studies to do, and we know to plan on some hospitalizations during the winter. What it comes down to is that he'll more than likely have to be hospitalized every time he gets a cold or the flu because his lungs won't be able to handle any kind of extra work. At least we know what to expect, though, and I'm okay with that.

So, the next couple of days are going to be used to titrate his oxygen levels and make sure he's safe to go home. And then, if all goes well, we should be home by the weekend!!!! I think this calls for some sort of celebration or party or something, but maybe not at my house. Church friends have made it so clean and tidy that I just don't have the heart to invite dozens of people in to mess it up.

Anyway, there you go. Put on your party frocks and meet us someplace other than my house to have a very low-key party that won't work Little Guy up into having to work harder to breathe and jump (carefully) for joy with us that we get to bring our sweet boy home and once again resume some semblance of normalcy. (Was that a run-on sentence?)

We're Out of Surgery

Little Guy did great through the lung biopsy surgery. He hasn't had to go to ICU and is back on the pulmonology unit, but is in a lot of pain. He is being given lots of pain control medicine, but still just lays there moaning in his sleep. So sad. Poor Little Guy. He also isn't urinating, so the left side of his face is swelling. The doctors have ordered a catheter to drain the excess fluids from his bladder. He doesn't want to be touched, so I'm confident he'll be feeling the need to send a strongly worded letter to someone when he's being cathed. Hopefully, as the days go by, his pain level will subside and he'll be able to rest comfortably.

Little Guy Wants Your Smiles

All of Little Guy's tests have come back negative so far. So, tomorrow morning he will have a lung biopsy. There are some risks to the procedure and we're a little nervous about it. But, we have an amazing team of doctors and Little Guy received a priesthood blessing tonight that was both comforting and reassuring.

This is our last-ditch effort. If this test doesn't tell us something, we're back to square one. We're opting not to even think about that right now and are instead thinking positively and just planning on getting all the answers we need from this biopsy.

One thing Little Guy just can't get enough of is faces looking back at him. Lots and lots of faces. We're trying to collect and print all the happy smiling faces we can get and put them all over his room and crib. A friend of our's kindly made Little Guy his very own blog. It's at www.faces4liam.blogspot.com . I hope you'll stop by it and e-mail your smiling face to the e-mail address listed on the right-hand side. He'll be so delighted to see all your faces smiling back at him and cheering him on. With the right attitude, we're just sure he'll be home in no time.