The gift of you

A few weeks after Caleb was born, I remember daring to hope that he'd still be with me on my birthday. My birthday was 3 months away.
When Dallan would ask what I wanted my reply was always the same.
I just wanted Caleb.

Ever since Caleb had RSV and Pneumonia in February, he hasn't seemed quite able to get all better. He had a trach infection several weeks ago, and on my birthday he was diagnosed with pneumonia again. Doctors think it's likely that his trach infection didn't clear up like we had hoped, and that is what caused him to develop pneumonia.

Right now he is getting a 3 day series of shots, is taking 2 more antibiotics through his g tube, and is getting antibiotic drops in his ears because they are not feeling well either. We've increased his oxygen, and we're having him spend some extra time on his ventilator.
Poor little boy.

I know Caleb has had pneumonia numerous times. You would think I'd be used to it by now. I have to admit- it never gets easier. It's hard every time.
It makes me cry.

However,

When I was sitting in the waiting room wondering if we'd have time for birthday cake, I realized I had my most desired birthday wish. I was waiting for the doctor with my 5 year old little boy on my lap.
I got Caleb.
And I can't imagine a greater gift than that.

Dear Caleb,
I'm so thankful we got to share another birthday together.
Thank you for giving me the gift of - you.

Love,
Mom

The wink dog

The boys had a good chuckle when Dad made
the dog just right for Caleb.

Brother time

Matthew loves his watch.

He loves Caleb even more.

Do you know how I know?
I found Caleb with his watch on.

Dear Matthew
Thank you for always having time for me.
Love,
Caleb

Birds eye view

I peeked over the top of my stairs to check on Caleb, and this is what I saw.

I think I saw heaven from way up there.

Batter up!

Even though Caleb has had a trach infection for the last 2 weeks, we couldn't resist the chance to enjoy one of the few sunny days we had over Spring break! We watched the BYU women's softball team play UTAH on a beautiful Saturday afternoon. We munched hot dogs, watched BYU win, and soaked up lots of sunshine!
Batter up my cute boy!

BFF's

The other night Matthew whispered to Dallan
"Caleb is my best friend."

Easter

I love Easter.
I love all that it represents.
As I've been reflecting on Easter and what it means to me, I've been remembering a lonely night I had in the hospital right after Caleb was born. We were told he might not make it through the night.
I was broken.
I felt like every cell in my body- was sad.
I remember thinking "even the people who love me the most can't understand how I feel in this moment."
My heart was in anguish.
Then my phone rang. A friend called to tell me about the prayer that was said in church for our family. The prayer asked Heavenly Father to comfort us because He knew what it was like to lose a son.
He knew.
I was then that I realized His son also knew. My older brother, my Savior Jesus Christ knew. He knew because He felt my sorrow in a personal moment in Gethsemane. That night as I was in and out of sleep and tears, the phrase He knows kept returning to my mind.
This Easter I want to share with you what
I know:

I know that our Savior has conquered death.

I know that He lives.

I know that through him my family can be together forever.

I know that He knows.

Sending love to you this Easter season!

March

I've decided to like March. It has Spunk.
In one moment we see snow,

and in the next we see blooms.

I think it's the sparkle in the snow

that reminds Spring flowers
there is just enough sunshine
to keep growing.

Tinsel Time

The other day I put Caleb in his chair with some tinsel in his lap to touch.
When I came back to check on him
he was holding one hand HIGH in the air!
Do you know what that means?
He didn't want to touch it!
He had his own little opinion!
I watched him slowly lower his hand until it touched the tinsel again.
Up went the hand
then back down again
until he decided maybe it was okay to touch after all!

On purpose

Tonight as I was caring for Caleb,
he woke up and smiled!
Then he reached out to me
with one arm and hand
ON PURPOSE!
I know it!
It wasn't a stretch.
It wasn't seizure activity.
He was trying to touch me.
And he did.
In more ways than one.

What could have been

When we were expecting Caleb, we knew he would have significant challenges. We knew he might not be born alive. When he was, we were hurried out of the NICU so that he could die at home. Our hearts were broken as we contemplated losing our baby boy, and we knew each day we had was a precious gift.
Because we've been so worried about losing him, we haven't mourned what could have been for Caleb. He could have quickly returned to heaven, but instead he has quietly brought heaven to us.
It is okay that he has a special body.
His presence...is enough.

I love you my angel boy.

Handshake

As Matthew snuggled with Caleb in his bed tonight, he turned to me and said,
"Me and Caleb have a special handshake."
Then he showed me how he wrapped his hand around Caleb's and shaped it into a little fist. Then he put his finger into the little hole in the middle so Caleb could hold it.
I don't know why that made me cry.
But it did.
After his demonstration, Matthew pulled the covers around them both and fell asleep.
That made me cry, too.

Dozy and Cozy

Caleb's been hibernating for the past few weeks. I'll bet it won't be long before he wakes up from his Winter nap to enjoy the Spring!

Shhh...

Preschool

Caleb started receiving preschool services at our home this week! He qualifies to attend the special needs preschool at our local elementary school, but he is too medically fragile to attend. So, we've recently been able to arrange for a preschool teacher to come to our home twice a week to do preschool with him. We are truly blessed to have a wonderful vision therapist and preschool teacher who take the time to love and teach our sweet boy.

Such a sweet little face...

Sick with a smile

Caleb seems to have gotten over RSV. He is still working on the pnemonia in his left lower lobe. He's been really sleepy for the past 2 weeks while his body works on getting better, but he always find a minute to wake up and give me a little smile.

Brows

Do Caleb's eyebrows remind you of anyone else?
He got my blue eyes and Daddy's brows.... I think it's a pretty cute combination myself!

Light

I think it's fitting
that my little boy who is so full of light
Loves light.
Caleb's vision teachers often uses a light box when she comes to visit. It's one of Caleb's favorite toys. It makes my heart happy to see him enjoying his senses in his own sweet way.

Love Pillow

Caleb can't help but feel loved

While he is resting on his special Valentine pillow.

Even though he isn't feeling well

It reminds him how loved he is by all of us

including one special lady

who sewed love into every stitch.

Thank you!

Thankful

It has been a whole year since we've been admitted to the hospital. One year ago we were just getting home from Caleb's g tube and nissin surgery. That surgery ended a long season of surgeries, pneumonias and hospital stays.

We came home with a ventilator so we could hook Caleb up to it at night and hopefully help his lungs improve. Bringing a ventilator home was an extremely difficult decision for me. I didn't want him to need it. I was worried that I'd eventually find myself in a place where he was needing it more and more, and I wouldn't know when enough was enough.

After praying about it, we decided to bring it home and use it as we saw fit. We felt like if it helped Caleb feel happy in his body, and if it helped us keep him at home rather than the hospital, then it would be worth it.

Now that it's been a whole year without a hospital stay, I would say it has been worth it. Especially now because Caleb has RSV. He has also developed pneumonia as a secondary infection. Because we have the ventilator so far we've been able to treat him at home. He's on antibiotics and is requiring extra oxygen through his ventilator- but he's HOME. He's been pretty sick, but we've been able to keep him stable. Today he even perked up long enough to give me a smile.

I still don't know what the future holds. I still don't always know how I feel about having a ventilator at home. I still don't want him to need it. But today....I'm thankful.