Wink from Heaven: January 2011

Sunday, January 30, 2011

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?!

Saturday, January 29, 2011

Meet Winkie Bear

I Hope he tickles you

as much as he's tickled us!

THANK YOU!!

Friday, January 28, 2011

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.

Thursday, January 27, 2011

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!

Friday, January 21, 2011

Parenting: Touching the Hearts of Our Youth

Monday, January 17, 2011

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!

Sunday, January 16, 2011

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!

Saturday, January 15, 2011

Balloon boy

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

Friday, January 14, 2011

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

Monday, January 3, 2011

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.

Heaven sent...
We were blessed with a little boy who always winked!
Caleb's brain did not form, and doctors didn't expect him to live for more than a few weeks. After 8 days in the NICU doctors sent us home saying there was nothing more they could do. Among his various physical challenges, Caleb was missing one of his eyes. Even though he was never be able to say "I love you" with words, he told us every day with his "wink!" His little wink was a daily message of love from heaven.

Caleb’s spirit radiated pure love. He brought the love of God and light of Christ into the lives of all who knew him. Caleb’s life was a precious gift and a tender miracle. His winking eye was a daily reminder of Caleb’s deep love for all of us. Caleb could have quickly returned to heaven but instead he brought heaven to us for seven years.

Caleb was a precious gift to our family, and now it is our priveledge to live in such a way that we will be reunited with him forever.

Prayer for Caleb

(written by Caleb's Grandma in her weekly column -2008-)

In my family we have a secret code to communicate our love for each other when we are out in public. We wink. When one of us is about to perform or speak, we look for a family member’s face in the crowd. Then we wink at each other. Closing one eye and winking is our secret code for saying, “I love you. You can do it. You’re wonderful.”

About three years ago, my grandson Caleb was born into our family. He must have known before birth that he would never be able to speak to us because he was born with one eyelid permanently closed. So, he is always “winking” at us, always communicating, “I love you. You can do it. You’re wonderful.”

Caleb has one eye lid permanently closed because he is missing one of his eyes . . . and he is also missing his brain. All the doctors said he would die soon after birth. They were wrong. Caleb is three years old. He is a medical miracle. The doctors say he can’t see, hear, speak, think or move. Those who know and love Caleb understand he has his own unique way of experiencing the world and communicating his love to those around him.

After Caleb was born the hospice people told us to buy a burial plot and continually warned us of his imminent death. We soon learned you can not live well in a state of fear and sadness. We decided we could spend Caleb’s entire life anxious and scared he might die at any moment, or we could celebrate each day we were blessed to have him with us. In the beginning, my daughter April celebrated Caleb’s birthday every week instead of every year with balloons and cupcakes because we simply did not know how long we would have him with us. We stopped the cupcakes after we gained ten pounds, but the celebrating goes on.

We all prayed for a miracle when we first learned about Caleb’s condition. We got one. Caleb’s birth, life and mission have had a deep and lasting impact on our lives. His spirit, eternal identity and most of all the loving, individual relationship he has with each of us is truly a miracle. Because of Caleb we know that each of us has a divine purpose and that the physical body is a sacred gift we should never take for granted. We better understand the worth of a soul and the resiliency of the human spirit.

Caleb’s five year old brother Matthew said, “Grandma. The doctors said Caleb was going to die, but he didn’t. That’s the first miracle I ever saw!”

Sometimes Caleb’s baby brother Mitchell pulls out his feeding tube while they hold hands riding together in their double stroller. Sometimes the only intervention that can get Caleb’s heart rate up is when his older brothers Josh and Matty crawl in his crib, hug him and sing, “I am a Child of God.” ...If you have a moment please offer a prayer for the little boy who has never been able to utter a single word and yet has taught everyone who knows and loves him – all the secrets of a rich and meaningful life.