Peter

We watched Peter last night while his parents went to a special function. He is the sweetest little boy and Kyle, Jordan, and Tanner just adore him. He has cystic fibrosis (genetic disease that causes him to produce unusually thick mucus that clogs vital organs, especially the pancreas and the lungs) and since his parents were out late, we needed to give him his night time medications and do his nightly routine of vibrating vest and nebulizer. Wow, such an experience!

First of all, this is what his mother, Marchet (she's taken lots of our family photos) emailed me today, "That is the FIRST time we have ever had someone else take care of all those night time meds and treatments. It's been so hard to be "mobile" with our little guy the same way other people are with their kids. (He has a lot of equipment!) Anyway, you did great. Thank you so much!"

For an evening out, they packed a suit case with his equipment and medications. She had a two page print out of information on what I needed to do for Peter. None of it is hard to do, but there are quite a few steps and a few things to know. In a nutshell, here it is:

- add three pills of creon to his applesauce so he will be able to digest his food

- give him his special high nutrient, high calorie drink

- give him the three syringes of medicine before bedtime

- help him put on his vibrating vest, turn the machine to the right levels, and make sure it runs correctly for 20 minutes

- pour the albuterol into the nebulizer and give it to him. Turn the nebulizer on and he will hold it to his face for 20 minutes

- turn on a fun Sesame Street show for him to watch while his vest shakes him for 20 minutes

What was so humbling was how Peter handled his routine. No complaints. No whining. No crying. He knew what needed to be done and so he did it. He was even a little proud to show my boys. I shouldn't be surprised because this is his life. He does this every single day. But I was surprised. I was surprised to see how normal it is for him to hold his little mask to his face for 20 minutes while he is shaken by his vest. I was surprised when he said, "Good job!" after I put his vest on and I said, "Thank you!" and he politely said, "You're welcome." I was surprised to hear him laughing and pretending to be like cookie monster while receiving his vest and nebulizer treatment. Peter surprised me, but I'm learning that Peter is a very special boy.

I did part of Peter's nightly routine (Marchet did a few more things before they dropped him off). I don't know the details of the morning routine, except that he does the vibrating vest for 20 minutes in the morning also. I had a tiny glimpse into Marchet and Jacob's lives and what it is like to have a child with cystic fibrosis. Oh my, oh my, I am so humbled. Marchet and Jacob, you amaze me. You are diligently fighting for Peter, and doing it with such positive attitudes. I want to be with you on May 15, 2010 at the Great Strides Walk in Atlanta, walking to cure cystic fibrosis. I am inspired by Peter and I am inspired by your examples. I love you guys so much.

Go here for Marchet's Great Strides link. Join their team! Walk with us on May 15th! Donate! We can help. You can read about the Butler's journey here. I especially LOVE the video they made last year. Watch it, and have a tissue handy.

*All pictures by Marchet.