Wink from Heaven: A Love/Hate Relationship

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.

9 comments:

Tara said...: Oh, April, I'm so sorry to hear that Caleb has had pneumonia. I'm so grateful that you've been able to stay home with him. I'm so sorry what that vent can sometimes symbolize, but so grateful for the positive things it does for Caleb and for you when you need it most. Love you guys and hope Caleb is feeling much better very soon.

p.s. Usually when I visit blogs, I have my computer on mute, but I'm so grateful I had the mute button off during this visit. What a lovely soundtrack for a lovely life with Mr. Caleb. Love you guys so much! xo; January 28, 2011 at 10:56 AM
Emily said...: How are things? Is he feeling better? I'm so glad he's been able to recover at home this week with his family all around.

Caleb is so lucky to have you, April.

XOXO; January 28, 2011 at 12:02 PM
shirlgirl said...: Hi April and Dallan--sorry that your precious angel has been battling pneumonia but so happy that you can have him at home. So scary for blood to be coming from his trach, but hope that has subsided and he is doing better. You are both so awesome, and I'll bet his brothers are glad that he is at home as well. I know how much they all love their sweet brother Caleb. Give those fat cheeks a kiss for me, and I send you all my love and prayers that Caleb will be feeling better real soon.; January 28, 2011 at 3:19 PM
Unknown said...: Thank goodness for relationships in which you don't have to feel guilty.
Give Caleb a kiss from me--I'll pray for his speedy recovery.
XO; January 28, 2011 at 3:29 PM
The Kings said...: oh poor Caleb. Hope he feels better soon. Pneumonia sucks big time. Things are so different here. There is no way we would be allowed to take a vent home - I wish our system was a lot different as it means we wouldn't have to end up in hospital so much.
Give him a kiss from us. xxx; January 29, 2011 at 3:24 AM
Colleen said...: I'm sorry your sweet boy has been sick. When Isaac has a cold or pneumonia we can put him on his bipap and he can rest his lungs. I didn't want to be friends with Mr. Vent at first....I was SO on the fence about this when they sent it home with us last winter. Now I'm glad we have it! Here's to staying home the rest of the winter.; January 29, 2011 at 9:32 AM
The Five Jacksons said...: Poor Caleb! What a challenge/blessing that machine is for your family. Get feeling better Caleb!; January 29, 2011 at 12:34 PM
Becky said...: I need to call you!!! xoxo I know that feeling all too well. I'm sorry Caleb is sick but I'm so grateful that you are able to keep him home where he belongs and is most comfortable!!!; January 29, 2011 at 12:40 PM
Anonymous said...: Sorry to hear this :( Really hope he improves asap x; January 29, 2011 at 7:00 PM

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.