A Rattle

"Vulnerability is life's great dare. It's life asking, 'Are you all in? Can you value your own vulnerability as much as you value it in others?'Answering yes to these questions is not weakness: it's courage beyond measure. It's daring greatly. And often the result of daring greatly isn't a victory march as much as it is a quiet sense of freedom mixed with a little battle fatigue."

~Brene' Brown, Daring Greatly

 

 

Thanks to my wonderful, sweet friend Jan (and also Kathryn's most prized and favorite nurse in the NICU) who sent me the quote above.  I love it so much, and am now, most certainly going to read the book.  Looked her up and found her website too, which I think everyone should check out.  Leave it to a smart, intelligent woman to research strength and vulnerability.  I love it. 

 

 

I'm sorry I haven't written much here, but you see, we've been a little busy.  And when I say busy, I mean we went to Disney World!

 

No real words to describe what a great week it was.  On a personal physical level, it was pretty exhausting for me, and of course, by the end of the week, I finally felt like I was sort of hitting my stride.  Or maybe it was just that my body had finally adjusted to being completely exhausted.

 

Either way, we played and ate our way through Disney (on that note--can't say I'm looking forward to stepping on the scale at the doctor Thursday). 

 

Thomas had a blast with his cousins, was a super champ on the rides (did the Haunted Mansion, and even the one kiddie roller coaster he could ride!), and got little, if any sleep.  But even in his sleep deprived state, overall, he was really really good. 

 

So enough of the talking. 

Here are a few of my favorite pictures from the trip.

 

Meeting Minnie

I have a picture from our honeymoon with this exact expression.  Love it.

Gramps, T, & BT

Check out the smile on little T's face

Magic Kingdom Circus Splash Zone

All the cousins with Zorg post-Buzz ride

With Mickey at Tusker House Character Breakfast

Animal Kingdom Petting Zoo

Me & T, with baby Micah in the belly

Family Dinner night, just the three of us, at California Grill

Toy Story Martians

The littlest cousins, hamming it up (just before Thomas poked Sarah Kate in the eye and caused big tears :)

E

Another big smile, meeting Pluto



So yes, we had a wonderful time.  It was so great to just get away for a week, and not think about the realities of life right now.  Disney certainly has a way of making that happen. 

 

There was, however, a moment on the trip, where even though I said I didn't want to talk about it, and I wanted to let it go for the week, that I realized someone just really wanted to have Micah be a part of our trip.

 

On Wednesday night, the night BT and I decided to have a little family night, just the three of us, after dinner, we went back to the Magic Kingdom.  After we rode the Winnie the Pooh ride, we were in the gift shop.  Thomas was looking at everything in the store, when he reached down, and picked up a Mickey baby rattle.

 

He held it up to my stomach, and in his sweetest voice, said, "I wanna get this for the baby."

BT and I looked at each other.  And while BT told him absolutely yes, we can get this for the baby, I left the store, with tears running down my face, and went outside in the darkness, with people all around, to cry. 

That's the thing about Disney World.

People are so committed to forgetting their cares, that in the dark, next to the Mad Hatter's Tea Party, no one pays  much attention to the woman crying over her family's pain, pleading out to God for ALL her children.

So I sat there.  And stared at the wall, with tears running down my face, and prayed to God to spare my son from having to lose another sibling.  I prayed that he shield Thomas from this, and teach him that while life isn't fair, we can still be brave and keep our hopes and prayers towards bringing Micah home. 

And so now, that rattle sits on my dresser.  It sits there, as a reminder to me that if my two year old son can believe his brother will be with him some day, then so can I.

When we got home, life immediately picked up the pace again.  I had some volunteer work that I do every year this weekend, and of course yesterday, we went in for the second shunt.

Good news and bad news:
Good news is: the second shunt is now in on the left side.
Bad news is: strong-willed baby Micah pulled the right shunt out at some point in the last week and a half. 

I really don't know much more than that right now. 
I know it hurt.  Alot.  Again.

And I know I'm going back Thursday for another doctor appointment to check the shunt placement and make sure the fluid is draining off again, but as of now am unsure if he's going to attempt to put the right shunt in again.  I think it all depends on how well the fluid is draining.  This is also not necessarily one of those things that you just want to keep doing and doing, as there is risk involved every time.  It's also very painful for me afterwards, and Dr. G. doesn't necessarily want to continue sticking Micah repeatedly with a needle the thickness of a meat thermometer.

So we'll pray this one stays put, that it works, and then...we'll just go from there.

Because right now, you see, I have that rattle. 

And I'm holding on to it with all I've got.