Delicious company

Last I was able to sneak away to spend some time with these lovely ladies and their special children. Caleb wasn't feeling well enough to venture out, but hopefully he'll join us next time! It was wonderful to enjoy such scrumptious treats and delightful friendships.

Thank you for being dear friends and for sharing your children with me!

Simply Love

The other day Matthew was snuggled up to Caleb and said,

"I just love being by Caleb because he makes everything slow down."

I love how Caleb teaches each one of us how to slow down and simply love each other.

Families are Forever

Having Caleb has given me the wonderful opportunity to meet other special children.  Whether in person, through blogging,or through e mail, my heart is wrapped around these dear families.  We can't always meet each other in person because many of us stay close to home with our oxygen tanks and feeding pumps, but our hearts are knit together in unity and love.  And so, when one of these sweet mamas has to say good bye to their little one, my heart breaks with them.  Whether I know her from her comments, e mails, or special visits, my heart aches.  So today, my heart is tender as I love Erin, Bekah, Becky and  many other mamas who've recently said good bye.  I hope you know that my heart is wrapped around you on tender days, and always.

Happy Valentines Day!

Dear Caleb,

Happy Valentines Day my sweet boy

Words cannot ever truly express the love I have in my heart for you.

I love how you for remind me each day what Heaven feels like.

I love the little ways you show you know I'm your mama.

I love how you smile at me first thing in the morning when you hear my voice.

I love how you are so patient with your little body.

I love how you are true to your mission.

I love how you are a light to all who know you. 

I love how you are so pure and untouched by the world.

I love how you lick your lips when I put fruity chapstick on them-

and I love giving you fruity kisses.

I love you just the way you are - from your fluffy little feet to your wee little wink.

I love how you fill my heart to over flowing.

I love you forever,

Mom

Staying Cozy

This time of year is tricky for Caleb, so we're keeping him cozy and comfy at home while his lungs try to feel better.

Caleb finished his antibiotics for pneumonia a few days ago.  I took him back for more chest X rays on Saturday, and his lungs had improved a bit. His respiratory rate is still elevated, and he needs extra oxygen and suctioning.  That isn't uncommon for Caleb, though.  He usually needs lots of extra time to over come illness.  He has good days and tricky days, but we're home all together and that's our favorite place to be!

A surprise from down under!

Dear Noah, 

Thank you for the Tasmanian Devil all the way from  Tasmania!  I love it a whole bunch!

Love, 

Your buddy Caleb

On the mend...

Caleb seems to be on the mend. He still needs extra suctioning and increased oxygen, but his face lit up when he saw a big red Elmo light up our TV screen. For my little boy who has cortical vision/blindness... I think that's a great sign, Don't you?!

Meet Winkie Bear

I Hope he tickles you 

as much as he's tickled us!

THANK YOU!!

A Love/Hate Relationship

I have a love/ hate relationship with Mr. Vent.

During one of Caleb's hospital stays for pneumonia, we were encouraged to bring him home on a ventilator.  It was to be used primarily at night time to give his lungs a rest.  I agonized over bringing it home. I wasn't sure that we wanted things to head in "that direction."

I hate that ventilators so often coinside with end of life. I hate that it might it mean making hard decisions in the future...

We carefully considered our goals with Caleb as we made our decision:  

We want him to feel joy in his body.

We want him to be at home with us. 

We decided to bring the ventilator home hoping it would help us  reach those goals for our little boy.

Even though I hate what a ventilator sometimes stands for,  I've developed more of a love/hate relationship with it.

Caleb has been battling pneumonia this week.  I love that we've been able to stay at home.  I love that we have the tools we need to help him recover in a cozy loving environment.  He had a rough few days with a high respiratory and a high heart rate.  He had blood coming out of his trach for almost 36 hours... yet, rather that spend the week or two in the hospital, we've been able to take care of him at home thanks to our ventilator.

We aren't able to stay away from the hospital for every illness, but our many machines have made it possible to stay at home more often.

 Thank you Mr. Vent, for being the friend that I love to hate.

Tunes

One of my favorite things is Caleb in headphones listening to some tunes!  The selection of the day... The MY LIFE soundtrack--- I used to listen to it every night in college when I was going to sleep.  Looks like it had the same effect on Caleb!

Parenting: Touching the Hearts of Our Youth

Shared victory

Matthew has been playing basket ball!  He even scored a basket in his last game!  Caleb is the first person he finds when he gets home because, after all, a victory is much sweeter when it's shared with someone you love!

CTR

Last Sunday Caleb's primary teacher brought him a little part of the lesson!

CTR choose the right-a great badge for my little boy who does that perfectly!

Balloon boy

Caleb has loved looking at the balloons floating around his wheel chair the past few days!

Caleb's 6th birthday

Happy Birthday dear Caleb!

Caleb had a wonderful birthday! There was such a special spirit in our home as we reflected on the past 6 years. 

6 years ago we were driving to the hospital on cold winter morning to have a new baby boy. We didn't know if we would have even have the chance to say hello before we would have to say good bye.

6 years ago we were told we'd likely have days or weeks. We were encouraged to purchase a burial plot. We left the hospital on hospice care.

6 years ago we came home to a room full of hospital equipment and hearts full of worry.

6 years ago on my way to that hospital, I kept thinking to myself, in a few hours my life will never be the same.

It hasn't.

And I am forever thankful.

Each of the children helped pick a gift from the birthday bag to give to Caleb

A special friend

With a special delivery all the way from New Hampshire.

Thank you Ben.  Tears.

Remind you of UP?

A special "I Spy" quilt from a special family.

A surprise visit from two of our favorite people! 

Bright balloons snuggles and foot-rubs were the perfect gifts!

This special grandma shares the same birthday!

Granny B wrote Caleb a special birthday story.  

You can read it here.  Have a tissue ready. 

The one and only Grandpa B

Brother Buddy Matthew "Match"

Uncle John and Aunt Alisa

Big Brother Josh'ers'

Little Brother Mitch'ie'

Pretty proud parents

Wink around the World

Caleb celebrates his 6^th birthday this week!  

Our little miracle turns 6!  

He is old enough to be in kindergarten, 

and he has two wiggle front teeth.  

To an outsider looking in Caleb’s physical capabilities haven’t changed very much since he was a baby.  

His body isn’t able to hold his head, to sit or to stand.  

His mouth doesn’t know how to eat.  

He needs help to breathe.  

His eyes don’t always see and his muscles need help to stretch and reach.  

He loves to be held.  

Yet, insiders know

 though Caleb can’t lift his head. He lifts.  

Though his mouth can’t eat, his smile radiates.  

Though he needs help to breathe, his breathes hope.  

His eyes don’t always see, but he winks.  

His muscles need help, but he reaches out.  

He loves to be held, but it is he who holds us.  

Caleb loves- really loves.  

His little wink reminds us every day that love is his mission. 

So this year Caleb has a special birthday wish.  

WINK.  

Find a way to love someone.

 Let’s see if we can send a wink around the world for my little boy

 who has never uttered a word yet says so much with a little 

WINK.  

If you'd like to take the challenge, leave us a comment telling us where you're from- then spread the word!  Let's see if we can share a Wink around the World for my little boy who has never uttered a word, yet who says so much- with a little wink.

 

Happy New Year!

Hope your new year is full of love.