I don't even know what to say.

It's the holiday season.  And amidst the stress, and the gift buying and wrapping, planning,...all of that, there is the simple fact that I am still among a new crowd of people.  A crowd of people that may or may not still have their miracle babies with them this holiday season.  Some babies never make it to their first Christmas.  It might be a bit of post partum, or me just being emotional as I usually am, but it literally takes me by the throat when I address how this Christmas makes me feel.  While I hear of my normal friends talking about Christmas programs, or what they "got for christmas," I'm also reading of my internet/blog/heart mommy friends....friends who are learning to cope with one less stocking on the mantle.  Jesus saved my son.  We got to spend Christmas with all of our children at home.  Together.  I am blessed beyond measure.

Control Freak

I guess it was inevitable that this would happen.  Logan arrived for Christmas visit with a cold...me being the one with an overflowing plate, got sick.

Joel had his 3 month follow up with Cardiology this morning and, feeling like the walking dead, was forced to hand over an appointment to Adam.  I've never missed one of his appointments.....well, I've never missed one of his ANYTHING.  And it was torture.  Laying in bed while someone else was discussing my son's heart was absolute torture, but we all got through it.  And after they all got home, I realized that it was just as torturous for Adam to try and answer questions at one of Joel's dr. appointments. :)

The appointment went well!  His echo & EKG were both great.  He screamed his way through the ultrasound as usual, but other than that, they said everything was pretty normal.  We have him on a Holter monitor for the next 24 hours to record any abnormalities.  The arrythmias Joel has been having didn't show up in the tests, but that may be because of his increased sotalol dose. 

I guess that's all I can tell you.  I don't like being the one hearing second hand information.  It just seems like with a kid like Joel, there has to be at least 1 person who is there for everything.  One person who knows all of it.  That person needs to be me.....so I better get well soon.  Ni-nite!

Feedin' Birds

I read an essay about a mother who locked her kids out of the house during "snow-week" after being cooped-up in the house for 3 days straight.  It sounds abusive and terrible, but it was absolutely hilarious...if you  happen to read any of David Sedaris' work, this story is called "snow day."

Please note that I LOVE MY CHILDREN with every speck of my human heart.  Every speck.  And it's not snowing here, but I do live in Washington, and it rains most of the fall, winter, and spring.  I'm used to it, and most of the things I love to do are indoors anyway.

BUT....If I had the opportunity to have no kids or nurses for ONE DAY.  Just one day, this is what I would do:

1) Wake up at 8.  This is sleeping in for me.  Have a latte (we don't own an espresso machine...sigh, but IF I DID...) and a cream cheese danish for breakfast, and read my bible.  In peace.  No rush, no report to get, no kids to feed, no "Honey, could you...?"  Just silence, and the smell of good coffee, with the perfect view out my master bedroom window. 

2) Turn on my new Norah Jones cd and listen to all of the words without being interrupted.  In the bathtub.  ALONE in the bathtub. 

3)  Get back in bed and watch a movie in my jammies, and knit. 

4)  Go downstairs for lunch, not have to see anyone, get into the fridge and see that the refrigerator is pre-stocked for me to make a turkey sandwich just the way I like it.  Iced tea too.  Go back upstairs, restart my movie marathon, and eat my lunch in bed.

5)  Call an old friend.

6)  Take a nap without having to think about 'how many more minutes I have until I have to wake up.'

7) Paint my nails.

8)  Browse through a stationary store.

I know, it's pretty boring.  But I can't remember the last time I was alone for an entire day...(the hospital doesn't count.  I was bordering a mental breakdown...) I guess I'm just a little "cooped up," and the boys have been playing wii for two straight days, and everytime we seem to get out of the house I end up responsible for everyone getting out the door, and snacks, and packing extra underwear...and Joel...

Mommy needs a mommy-break.  In her own home. :)

Sermon Notes

I texted a friend this excerpt from a sermon I took notes on.  She couldn't forgive her mother for all the awful things she'd done to her as a child.

You change your mind and it begins to change your heart.  Keep changing your mind and God will change your heart.

Once again, my words have bitten me in the butt.  I know I need to keep my head up.  I know Joel is literally jumping milestones right now.  I know where we've been.  And I'm trying to change my attitude.  Trying to change my heart.

You may have seen the first video of Joel on his Passy-Muir.  It's a one-way valve, letting air come in through the trach, but only out the mouth.  He HATED it with a passion at first, but we've come a long way since then.  Here's a newer passy trial.

This is one of Joel's favorite things...SPINNING in his exersaucer :)