Saturday, July 26, 2008

Angie Nadauld

You all don't know me from a whole in the wall, and you probably will never know me. I have been following your story for quite some time. Call me a blog stalker if you will, but I get really intrigued by stories of young children. I got to your blog through little Andrew Mathis, who also has no clue who I am but I know Andrew's Gramma as she lives in my ward.

Anyway, I will cut to the chase, little Charlie has touched my heart. I mean that with all sincerity. I have a son his age, and a son who is four years old. I often times would get frustrated with my two little naughty boys, and I still do, but I have such a greater appreciation for them. I saw what happened with little Charlie, how he was healthy and happy, to now being deaf and blind. How devastating. But the way in which you handle the trials you have been given, have touched me beyond belief. I am sure you have gone through many stages of grief, but I am so touched at the complete dedication you have to that little guy. It is amazing to see how you have accepted the trials you have been given, and enjoy the best parts of life.

I am a huge Ute fan. THis is another area of major change of thought. I have NEVER been a fan of BYU. I don't know why, maybe it is the fact that I am a U of U Alumnus, or maybe I just don't like the color blue, and the fact that their QB cried on TV after losing a game had a huge impact on my outlook on the team. But the fact that both of those football teams came and spent time with Little Charlie, have changed my out look. BYU is as cool as the U Of U.

So to summarize, Charlie and your whole family has taught me to appreciate what I have. I now appreciate that I have two boys that are capable of being naughty. I appreciate that I have two little dudes that will fight and steal toys from one another, because, who knows what may happen. It is all in the Lord's hands. I have learned to be grateful for what I have, and because of that I enjoy my boys that much more!

Sincerely, Angie Nadauld, a complete stranger!

Thursday, July 24, 2008

Marilee Christian

Fortunately for you all we have had some good response to my plea to help w/ the blog and now you will be able to hear more from competent, sane folks and less from me. There are great stories out there and starting w/ today’s post you’ll get to hear them. Those of you who are thinking about contributing hopefully in the next few days you’ll hear what is shared and you’ll stop thinking and start doing.
This first offering is from Charlie’s Aunt Marilee who lives in lives in “The Volunteer State” and was up here this summer and had a chance to see Charlie for the first time live. She has been a frequent commentor on the blog and I always appreciate her wit and humor. Marilee is no stranger to the angst of full-time care as a few years back her husband David suffered a stroke and she has since served the mission of a selfless caregiver. Thanks for the submission.

My Charlie Story

To quote Rob “We’d love to hear how Charlie has influenced you, whether big, small or not at all.” You asked for it—you got it.

I first heard of Charlie’s illness and blog through an email from Susie. What a terrible thing for Charlie, a child I had never met or held or seen. But my heart was also broken for the people I did know: my precious nephew and his wife and his grandma, my sister, who has always put her family above all else. Day after day—no, hour after hour, I checked the blog for some word that Charlie would be okay. Alas, that was not to be. But then something else happened. I found my family again.

By following the progress, the ups and downs, the gains and losses I gained what I had thought I had lost; an everyday connection with my sisters, brothers, cousins, nieces and nephews. Is that selfish? There lies a sick child, a gift from heavenly father, suffering and struggling and I’m glad that there is a blog to give me a way to connect with the sorrow and pain of my family.

And, whoa, there were pictures. There, standing by Charlie, was my family. My sisters and brothers, children I remembered as babies--grown, and some, like Charlie, I saw for the first time.

Then, as word of the blog spread, there came many more. These were people who were inspired to comment and share their thoughts, as well as prayers, for a child they did not know. But for one reason or another, they could empathize with Charlie and his family’s plight. As I read their stories, along with Charlie’s, I was amazed at the faith and resilience of the human experience. Now, I had always understood that in theory, but there it was, in the comments of families of other children who had suffered in illness or accident.

I have not always been strong and I didn’t expect to spend my golden years as a caregiver, but reading the excellent adventures of Charlie and his family have given me the great blessing of –hey, my life ain’t so bad!

Tuesday, July 22, 2008

Sunday, July 20, 2008

Just a Couple of Thoughts...

Fill up your favorite beve’ and buckle down, w/ all thats in my head this post has novel potential and could w/o intent become protracted. Angel and I are aware as any w/ the paucity of posting as of late and for those of you out there who actually still care we apologize. Understand as we try to, that there just isn’t that much in Charlie’s world that warrants posting now that we’re home, settled and living our new life. Granted we could continue on with repetitious and feckless updates about his daily routine but I don’t think that’s what anyone wants. I have an idea however, that might offer certain appeasement. We’ll keep posting about Charlie’s journey w/ pertinent events and improvements/regressions as they occur but due to the regrettable infrequency of said events we need some filler. I could continue w/ capricious and increasingly criticized posting where quality is oft a direct result of waning motivation but I’d rather subpoena your assistance.

Here’s the D-Low, those of you who consider yourselves regulars to Charlie’s blog, Angel and I want to hear from you. So I’m thinking in correlation w/ participation we would post your stories, weekly, monthly or whatever. We’d love to hear how Charlie has influenced you, whether big, small or not at all. Maybe you have a similar yarn, a tale that I think not only Angel and I would like to hear but everyone else as well. I’ve had regrets about this blog from the beginning but conversely we’ve had many great experiences because of it, reuniting w/ old friends and making so many new ones. We’ve loved learning and relearning about your lives and in most cases your lives are far more interesting than ours so I think it’s time to get a touch deeper into the world of some of those who Charlie calls friends. Capeesh? Entries of any length are welcome and if you have pictures you’d like included, well include them, whatever blows air up your skirt. Just start writing, pay no mind to grammar, spelling or punctuation, I dont. Charlie’s email is .
We’ll see how this goes, it’ll only be as good as you make it or it might go off like a nun’s knickers but hey I’ve been full of bad ideas all my life so no biggie.

Ode to Jared

For the uninformed Jared is Charlie’s uncle and my little brother. He’s a good kid and it’s high time you get to know him better. It seems like in the not to distant past I was still duct taping him to his bed post while he was clad in nothing but his skivies but as with all things, especially things like Charlie’s aunt Susan, he grew up or in Susan’s case, grew way up. Happy 80th sis I’ve got fresh tennis balls for your walker. Many of you probably know who Jared is, but few really know him. You see, he doesn’t say much and he likes it that way. (I know what you’re all thinking, "Rob has a sibling that doesn’t suffer from oral diarrhea?" Shut up!) He takes after our Granddad, Papa, who also is a man of few, and or no words but both are men who live by the creed that one ounce of action beat a ton of words. Neither of these fellers would probably ever tell you that they like you let alone use the word love, (unless your Katie, the only person Papa has ever openly admitted to liking.) and to illustrate my point I’ll share w/ you all the nicest things that these two have ever said to me. 1. Papa; while shingling my mothers roof, Papa upon suffering residuals of my faulty elimination stared me right in the eye and affectionately offered, "How can that much stink come from one man?" 2. Jared; after I had just been ushered into his ambulance as consequence of an ill fated skiing trip that ended in assistance from Davis County Search and Rescue and a helicopter extraction he uttered, "10 million sperm and you were the fastest?" In a round about way this brings me to my point. Jared really likes Charlie. He’s never said, but this is how we know. When Charlie first entered the Hospital we were in the final stages of finishing our house and I was scraping a leg worrying about deadlines, cabinets, flooring, etc… and he came to me in the PICU and simply said "You’re where you need to be, I’ll take care of it." He did. I didn’t worry about the house once while Charlie was in the hospital. Jared had to step way out of his comfort zone to fulfill his promise, he had to call people on the phone, talk to folks and coordinate the efforts of our little extreme home makeover. All of which went off swimmingly because he was dead set on having the house done so that when Charlie got out of the hospital he could come home to a new house. He did. That would have been enough for most folks but not Jared. One evening about a month ago I came home after being out of town for a week and found my yard graded and trenches dug for sprinklers. The kid doesn’t quit.

The next day Jared’s friend Greg from Farmington Fire showed up w/ a truck full of pipe and sprinkler parts and I was mid infarct wondering how to pay for all this stuff and Greg told me "Rob, It’s all taken care of." What??? He wouldn’t tell me how but after further investigation I discovered that a meeting took place with an incredibly generous group of people. These were folks, some of whom were familiar w/ Charlie but also some were folks that Jared had helped in some way or another, folks that and had tried to compensate him for his services w/ no success so instead they took advantage of my patheticness and bought my sprinklers. Now cogitate on this; how many people think highly enough of you that they would give to your unfamiliar sibling just because of who you are and what you’d done for them? I can think of one, Ryan Sterl the Pearl Webb. He’s 3 and he thinks I’m cool. So to this incredibly generous group of people, thank you. Thank you so much for such an overwhelming expression of selflessness. You’re great and I’ll try my damndest to find out who all of you are so I can thank you personally. Believably this story does have a bottleneck so here we go. Sprinklers got put in, w/o my help, lawn was laid, w/o my help, basically I’ve got a brand new beautiful yard that was all done w/o my help. The thing about Jared is he’ll never take credit for it, he wouldn’t even expect a thanks, he’s just one of the few people left out there that tells you they love you by showing you and we know Jared loves Charlie a ton. So Jar-head, not that you care, but thanks. Charlie loves you too.