Wink from Heaven: September 2011

Friday, September 30, 2011

September Strolls

I think someone has been enjoying these golden September evenings as much as I have...

Wednesday, September 21, 2011

Moments I don't want to forget: Movie Nights

Since having Caleb we have become night owls. His feeding and medication schedules have made it necessary to stay up with him until around midnight. As a result, we have some really sweet quiet time with him after we tuck the other boys in bed. For the past several months Dallan Caleb and I have been watching the "Larkrise to Candleford" BBC series in those later hours of the night. I sit on the couch and make a nest out of my legs for Caleb to sit in. I cover us up with blankets, and we watch an episode together. He melts into all of my space and rests his fuzzy little head against me.

I never want to forget the way it feels to have Caleb fill up my lap. I don't want to forget how sweet his hair smells when I rub my nose in it. I don't want to forget how peaceful it is to have him breathing with me, and I don't want to forget how sometimes we get so cozy we fall asleep together. Finally, I never want to forget how much I love to watch his little legs dangle over Dallan's arms as he's carried off to bed.

We love this time so much, that even on the nights when we could go to bed earlier... we don't.

Can you blame us?

Sunday, September 18, 2011

Baby Einstein

This summer I found 12 brand new baby Einstein DVDs at a yard sale for a dollar each! I'm always on the look out for items that will help Caleb use his vision, and I had a feeling he might enjoy them.

Caleb's vision is often "on and off" but today I snapped a few pictures of him as he was watching one of the DVD's. It just tickled me to see him respond to the images on the screen! My little boy who only has cortical vision certainly seems to like them. I know there will be off days, but boy oh boy the "On" days are cause to celebrate!

Saturday, September 17, 2011

Going Fishing

For Family Home Evening we took our boys to the school carnival! They had a great time using their tickets to play games and buy treats. The highlight of the night... watching Josh help Caleb at the fishing pond.

So sweet.

Friday, September 16, 2011

Spiderman

(During Caleb's last hospital stay)

Mitchell's favorite part of primary Children's hospital...

The SPIDERMAN statue!

With Mitchell and Spiderman on the loose, Caleb couldn't stay sick for long!

Spider, Spiderman,

Does whatever a spider can

Spins a web, any size,

Catches germs just like flies

Is he strong?

Listen bud,

He's got radioactive blood.

Can he swing from a thread

hang an IV bag over head...

You bet, he's Spiderman!

Thursday, September 15, 2011

Salem Pond

A warm September evening at Salem Pond

with my boys and my little brother and sister

plus ice cream on the way home

equals a pretty close to perfect night!

(more pictures and thoughts about my brother and sister here.)

Wondering where Caleb got his fluffy cheeks? Look no further...

Wednesday, September 14, 2011

Shading

I took the boys to the library today and noticed Josh wouldn't move away from the van door. When I finished unloading everything and saw him still standing there, I walked over to see what he was doing.

Josh had noticed that the sun was shining right into Caleb's eye, and he was shading him with his hands until I could unload him.

Such a simple gesture, but it touched my heart to see Josh

keeping a careful watch.

Sunday, September 11, 2011

Moments I don't want to forget: Ice cream

The day after we got home from the hospital we had a family gathering to watch the BYU game and celebrate my niece's birthday! I had Caleb on my lap while I was eating cake and ice cream and decided to let Caleb have a tiny bite of ice cream. He loved it! He even opened his mouth for more! It made me teary. You see, Caleb is fed through a g tube in his belly. He has a nissin and also has a cleft palate which has made oral feedings impossible. He has enjoyed cotton candy, licks of licorice and other little tastes, but I've never seen him respond the way he did to ice cream. I don't ever want to forget the joy on his face as watched him lick bite after bite off of his little lips.

Friday, September 2, 2011

We're Home!

(Hooray!)

Thursday, September 1, 2011

We love U!

Most of Caleb's puzzles have been solved... except for one. So, he is still in the hospital, but we should definitely be coming home tomorrow- just in time for labor day weekend and BYU football!

We are still waiting for the bacteria from the respiratory cultures to be identified so we can treat Caleb with the right medication when we get home. He may need a PIC line if he still needs IV meds, but hopefully we can transition to oral medication instead.

One of Caleb's night nurses at the hospital is a die hard UTE fan and kept insisting that Caleb's rash was from the BYU blanket I put putting on him. One morning I found a big "GO UTES" on our marker board, and today I found Caleb dressed in a shirt that he had decorated himself with a red marker! HILARIOUS! I couldn't stop laughing! Caleb and I decided we could be UTE fans just for today.

HAPPY FACTS ABOUT BEING ON THE FLOOR INSTEAD OF THE ICU:
* I can actually get Caleb dressed every day! He always looks way less sick when he's not just hanging out in his diaper with a million tubes showing (how embarrasing!)

* It's so much easier to get lots of snuggle time!

* I can bring food into the room and munch my heart out!

* If Caleb's on the floor instead of the ICU, it means the hospital stay is way less stressful!

* We were able to have some very sweet visitors spend some time with us!

Caleb's getting his sparkle back, and his cheeks are ever so smoochable!

Gotta love the rivalry banter!

Thank you too the wonderful doctors and nurses who have taken such good care of us.

We love U too!

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.