Wink from Heaven

Friday, March 25, 2011

Sunday, March 20, 2011

Untouched

I feel like the luckiest mama in the world

to have a little boy who is so untouched by it.

It is truly a blessing to care for someone so pure.

I love you, my Caleb.

Thursday, March 17, 2011

Lucky Day!

Happy St. Patrick's Day!

Caleb listened to some Enya this morning to celebrate!

Tooth Fairy Surprises

The tooth fairy left Caleb a bright slinky to use for vision time and an Easter Egg tree!

Monday, March 14, 2011

Caleb lost his first tooth today! Oh I am just GIDDY! Every time I see that little hole in his teeth I can't help but GIGGLE! Who would have thought my little boy, who was given so little hope, would be visited by the tooth fairy?

I am filled to the brim with GLEE!!

Friday, March 4, 2011

Visual Clutter

One of my favorite sensory tools for Caleb is the invisiboard. The website states: Block out distractions for students with Cortical Visual Impairment. This 48 by 30 inch, tri-fold board eliminates visual clutter with a solid white, slick material on one side and a solid black, Velcro compatible material on the other.

I love using this board with Caleb. I can surround him with a black background and give his eye the opportunity to focus on one thing. Right now we are focusing on items that are mostly yellow or reflective.

Just like the invisiboard helps me to reduce visual clutter for Caleb... Caleb reduces worldly clutter for me. He teaches me to be more reflective. He teaches me to focus on what matters most.

Thank you Caleb, for teaching me to truly see.

You can find more information about the invisiboard here and here
For some more great sensory ideas, visit Heidi's adaptations blog

Monday, February 28, 2011

My BYU boy

Psst... Did you hear BYU basketball is ranked #3... and they are well on their way to a possible #1 seed in the tournament?

My BYU boy isn't a bit surprised!

Caleb is still trying to feel better, but we couldn't resist a quick walk on a sunny day!

Time with cousins is time well spent!

Caleb's head fits into Dallan's hats perfectly.

That's what happens when your head is full of heavenly thoughts!

Go Cougars, and Go Caleb.

You're always #1 to me!

Rah Rah Rah!

Saturday, February 26, 2011

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!

Thursday, February 24, 2011

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.

Monday, February 21, 2011

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.

Monday, February 14, 2011

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

Wednesday, February 9, 2011

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!

Sunday, February 6, 2011

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

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!

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.