Wink from Heaven: August 2008

Tuesday, August 26, 2008

Caleb's dysphasia appointment

I took Caleb to Primary children's hospital this past week for a dysphasia appointment. We adjusted his diet to meet his caloric needs, and we are trying some different formulas and medications to see if we can help his tummy be more comfortable. We also spent a lot of time talking about a tracheostomy and a g tube. It really tugs at my heart to think of more surgeries when there are no guarantees that they will improve his quality of life. With Caleb there are never any clear answers...we'll keep learning more about our options and then and try to follow our hearts!

Summer time

This summer Caleb has slowly improved since his time in the PICU in February & March. We haven't been able to wean him from oxygen yet, but we've still tried to take him on a few family outings close to home! He enjoyed having his brothers home for the summer!

The temple for Family Home Evening

BYU campus

Cove Fort with the family

Brothers!

Always time to snuggle

All ready to go to Grandma's house for pioneer day

A field trip to the Bean Museum

Sporting his new shirt from Nana and Papa's mission

Fireworks in the driveway

Family Reunion

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.