Church attempt #1

We took Caleb to church with us for the first time since last November! We were so excited! We even made it all the way to the first speaker before Caleb started to struggle and Mitchell had a diaper escapade that couldn't be contained at church.
Do I think it was a failed attempt?
Nope!
It was a treat to be there all together as a family! Even with Josh and Matthew poking, Mitchell you know what-ing, and Caleb coughing- it was worth it! Next week I just know we'll make it so speaker number 2!

Better boy!

Caleb seems to be feeling quite a bit better today! I was able to turn his oxygen down a bit, and he had lots of smiles to share- even in his sleep!

Peace!

How sweet it is

to be loved by you!

Snuffy

Caleb seems to be feeling better from pnemonia,
but he still requires breathing treatments and 3 liters of oxygen to maintain good saturation levels.
I think he enjoys his nebulizer mask;
sometimes he likes to wear it on his nose instead of his trach just for fun. He thinks it makes him look like snuffalufagus.

Un-wanted guest

Caleb has lots of little visitors in his lungs. Some come and go. Some stay for a while. Some settle in and make themselves at home. Caleb didn't realize that pneumonia snuck in, but he's having a hard time getting rid of it! I don't want to be inhospitable, but I'd like this trespassing guest to hit the road as soon as possible! Caleb's lungs would like some privacy!

Whole

Are you having a girl or a boy? That seems to be the most often asked question when you're expecting a new little one. Those who don't have a preference might respond with something like: "We just want a healthy baby" or "we don't care as long as it has 10 fingers and ten toes..."
I probably would have agreed- before I had Caleb. When we were expecting Caleb, we knew his brain was missing the corpus collosum, but other than that, we had a limited amount of information. I remember the day that a doctor called me after viewing the results of an in-utero MRI. He casually told me that Caleb was missing one of his eyes.

One eye. Caleb only had one eye. Over the next few months, it seemed that every time we learned something new, something else was missing. When Caleb was born, we soon found out that he was missing his brain. That information wasn't the most devastating.

"You'll likely have weeks before his death...take him home, there is nothing more we can do" was the most devastating.

It didn't matter what was missing. It didn't matter that he wasn't a healthy baby.

I couldn't bear the thought of missing him....
Caleb isn't incomplete. In fact, he is more whole than I am.
I love every little part of him.
I wonder what I'll say the next time I'm expecting and I'm asked my preferences.
Perhaps I'll just answer that I'm profoundly thankful for the privilege.

This past week I took my 4 year old Caleb on a walk.

I took a picture of him over the top of his stroller.

10 little toes...

Perfect.

Just like he is.

I SPY

I SPY a little Caleb who went to the Walter Wick exhibit over Spring break....

Stumped?
That's because he's behind the camera with me...

now that's a great optical illusion!

Pumped!

Caleb got a fancy new feeding pump, and a new haircut, too!

The pump primes itself with the push of a button

and Caleb's as cute as a button with his fuzzy head!

Caleb has gained 5 pounds over the past couple of months! Caleb used to throw up at least once a day, but since having the nissin/g-tube surgery, he hasn't thrown up once! Now all of his extra calories are being pumped right to his cheeks- just where I like them!!

Sunny Days

And the forecast is...cloudy with a slight chance of sunshine...

We had a sunny day last week and couldn't resist a walk in the sunshine!

Happy Easter

Happy Easter to my eggs'tra special boy!

Worms

My little boys had fun fun playing with worms today.
Mitchell wanted to share his squirmy little friends with Caleb who was watching from the window.

Matthew helped him not to feel too nervous

and he put the worm on his hand

so that he could feel it wiggling!

I am a child of God

Cute

Just because I think you're cute!

Cozy crib

Caleb spends some cozy time in his crib each day
So I like to put a few bright toys beside him ...

because just in case he is in a glimpsing mood...

I want to keep it interresting!

Focusing

Caleb has a preschool/vision teacher who comes to see him for an hour each week. She brings various toys and textures for him to experience, and she really works with him on his vision. Sometimes Caleb responds to lights, sometimes he responds to bright colors, and today he responded to Boobah! We helped him touch it with his hands, then we helped his fingers push the buttons. Then Caleb's eye saw it! He really saw it! His eye usually wanders quite a bit but today he worked so hard to keep it focused on the toy. When his eye would start to wander, he would concentrate so hard to bring it back to see the toy! We were so excited!
Some days I can see that Caleb's eyes are focused on heavenly things, but today it was a real treat to see him use his vision to enjoy a toy for just a few moments!

He was tuckered out after playing hard!

But he wasn't too tired to give us a little smile

Big Brother

Matthew loves to crawl into Caleb's crib to snuggle him.

He loves his pudgy hands

He helps him talk

He just loves his winkie eye

He gives him "bunny ears" just like big brothers should

and when he sees he's being photographed, he finishes his snuggle in private!

Visiting Ben

Visiting Becky and Ben before he was life flighted back home to be in his own PICU! He was in the same room that Caleb was in during our last PICU visit. His spirit fills up the room just like Caleb's does. I hope Ben's nurses knew how lucky they were...

Bugs

The little boys in my family LOVE bugs! In the spring you'll find my older boys outside with their butterfly nets and bug catchers for hours at a time looking for some new specimens! Caleb likes bugs too! Sometimes we find the bugs he catches in his lungs. Yesterday we took him in for some chest x rays and cultures. We had heard some little bugs cackling in his lungs the night before. We were worried about pneumonia, but this time it looks like he just has a bug...a virus...so far he's handling it pretty well. We've turned up his oxygen; we've been keeping him suctioned, and we're keeping him nice and warm. Even though his brothers like to catch bugs, I think Caleb is ready to take a break from bug-catching for a while!

Caleb's buddy Ben is fighting some stubborn bugs in his lungs. His birthday is on Saturday! He's a little 'bugged' that he'll likely celebrate in the hospital...If you have a moment, say a little prayer for him and his sweet family!

Masterpiece

Tonight I've been going through some cards and letters I had filed to put in my book or remembrance. I came across a tender letter from my sister. It was written shortly after Caleb was born and I was in tears as I read it again. She ended with a quote:
"The more I think about it, the more I realize there is nothing more artistic than to love someone."
Vincent Van Vogh
She finished by saying: I think Caleb is your masterpiece.

The privilege of caring

Have you ever had the privilege of caring for something so beautiful
it took your breath away?
I have.
Have you ever cared so much
you couldn't find the words to describe it?
I have.

Sometimes I'm asked what our biggest challenges are in caring for Caleb.
It's not the hospital stays or therapy appointments.
It's not the dressings and diaper changes.
It's not his trach or his g tube cares.
It's not his medications or his monitors.
Taking care of Caleb is a part of the privilege of having him.
I think hardest part of caring so much is knowing
that some day I might have to say good bye.
But, even that worry is a tender part of the privilege of caring.

Sometimes we have challenges,
sometimes we're worried, sometimes we're sad,
sometimes we're disappointed, sometimes we're sick.
But it's all a part of the privilege of being here
and experiencing mortality to the fullest.
Sometimes we have challenges
but the plan is still perfect.
We are lovingly cared for
more than we can ever imagine.
When we look down deep we'll see that
what we have is beautiful.
It is perfect.

I love caring for Caleb.
He is perfect to me.
It is privilege that I can't find the words to describe.
It fills my heart
To care so deeply
and it takes my breath away
every day.

Matthew recently told me, "Mom, I just hope that when Caleb is resurrected he'll still have his winking eye because it's just so cute!"
I couldn't agree more!