Wednesday, May 8, 2013

Back to Kansas

Hallelujah! Landon slept through the night without a fuss yesterday. This is the first time since coming home that he has not cried between 2 and 6. Karen and I enjoyed the chance to sleep between feedings and I know that today we both felt more energetic. We even let Landon sleep without his apnea monitor on. The straps around his chest can get sore and make him irritable and he has not had any apnea spells since Thursday. It is nice to be able to actually carry him around the house or roll around his bassinet without worrying about cords and wires or whether the monitor is charged.

We left Nebraska shortly after noon and arrived back in Manhattan in time for dinner. We took the evening to nap, do laundry, and just spend some time together while Landon slept. I needed a few hours to study and Karen cleaned up and organized the room. We did have two of my classmates, Andrea and Brice, drop by tonight. I need to give a special thanks to Andrea for spearheading many of the fundraising events the school has put on for Landon and for providing me with notes to study while I've been away from school. Many of my classmates have provided notes and study aids for the upcoming tests and I will only be passing this semester on their backs. Andrea had the chance to hold Goat for the first time tonight and brought us some rhubarb cobbler. There is no visitor more welcome than the one that brings food! Ultimately, the day was uneventful but with the schedules we have been keeping, an uneventful day is the best kind of day.

I want to apologize to the hundreds of people who have emailed, called, sent letters, and contacted us in a variety of ways for not responding to all of your messages. I plan on getting around to all of them eventually and I want to express our appreciation for everyone's compassion, aid, and advice. The adventure we are going on now would be a much more difficult journey without all of your passion and assistance. Each word of encouragement and every read of the blog is another shoulder to help bear the burden of our situation and we are blessed to have so many friends, new and old, along with us.

Today, Danielle's story from New Zealand was shared with me and I wanted to pass it along to you. It's very short but makes an important point:

"My seven year old cousin was recently diagnosed with cancer.
A month ago he had half of his leg removed.
Before he went in for the operation he said, 'oh well, I'm off to get my pirate leg.'
Brave little boys inspire me and give me hope"

How much we can learn from children if we just let ourselves. Confidence that life will go on and be worth living, no matter what. Finding joy in our misfortunes and looking forward to the adventure that comes next. Anne Sullivan, the tutor of Helen Keller, was often critical of the way we teach children. I forget the exact quote but, paraphrasing, she once said that all our elaborate education systems wrong, as they are built upon the premise that all children are idiots who must be taught to think. Maybe, if we took a bit more time to learn from babes and kids and forgot our preconceptions, we could learn a few important lessons on approaching life with eyes and hearts open.

We worry about what a child will become tomorrow, yet we forget that he is someone today.


  1. What wonderful words of wisdom Trent and so true. You should really consider this blog the starting point of a book. It's a wonderful read, inspirational, and moving.

  2. Trent one of the most important parts of my day has become reading your blog. You are wise beyond your years and a true inspiration. I am keeping all of you in my thoughts and prayers. I hope to meet Landon too some day, he is a remarkable little guy and simply a beautiful baby.