Wednesday, May 28, 2008

my newest accessory

My posts these days are usually about logistics, and don't worry this one will be too, you'll just have to wait it out.
When something tragic happens, whether it be loss of a job, a pet, a loved one, we grieve. We go through the steps - maybe in order or maybe we jump around them. Boy, am I jumping these days.
I know we haven't lost Charlie - he is very much with us, so please do not think I feel that way. But when Charlie first got sick, I think that because of my own personal situation, I was one of the first to accept his diagnosis and outcome. Not because I wanted to, but because I had to. As difficult as it has been to go from seeing a perfect smiling baby one day, to a deaf boy who works hard to swallow and regulate his temperature a few short months later, I accepted it. I tried to move on and help those around me to accept it too. But lately, I have been mad about it. Questioning the fairness of it. Trying to understand why it was necessary. Crying over the milestones he won't reach with my babies... For the record, I believe Charlie was always meant to get meningitis and be the sweet boy he is now with a brain injury. But lately I have been so wrapped up in myself and my feelings about it that I have had a hard time with the acceptance.

Enter my point: Opposition in all things. We have to have bad things happen to fully appreciate the good. And the good we have seen - we continue to see every day. From family, from friends, from perfect strangers. I don't know how Jimmy Wilson came to know of Charlie and to deeply affect some of us close to Charlie, but he did. We didn't know him until about a month ago. He wanted to be involved in the 5K race and decided to make the wristbands for Charlie as a little fundraiser. Rob and Angel got to meet their family at the race. Jimmy wrote an email to us the other day, and Jimmy, I hope you don't mind me sharing pieces of it. He mentioned that he wanted to help and after much prayer he decided the wristbands would be a way to help. He shared that he believed that there are some elect people who chose to have "challenges" on this earth to benefit others and help others in their progression. And I think he's on to something... I agree with him that Charlie is a "perfect spirit so strong that he must have been something before coming here".
For the record, I believe the Wilson's have helped in many ways beyond the bracelets. The bracelet for me has been a tangible reminder for me of my sweet nephew...of the good of others...that I need to get over myself and enjoy today...of the way my life has changed in the past 4 months. He made the bracelet's the same colors as the race shirts - silver and burgundy swirled - burgundy represents Charlie's original diagnosis of Meningitis, and the silver represents Charlie's brain injury as an outcome.
SO back to the logistics we are... People have been asking how they can go about donating to get a bracelet. We have about 100 in Large, Medium and small (kiddo) sizes, each in limited amounts. If you would like bracelets, email Charlie's new hotmail account ( with the following information - Your name, bracelet size, and mailing address. We will mail them to you as close to the sizes you request as possible. You can donate to his paypal account or bank account - that information is on the side of the blog. Thank you to those who donate, and thank you again to the Wilson's for the gift you've given us and your sweet humility... and hopefully for not being too embarrassed or upset with me after this post.
-meghan - charlie's aunt

Monday, May 26, 2008

When A Sick Boy Gets Sick...

Realizing current pace of posting on this blog has slowed even to the point of becoming inert, I personally apologize for this infrequency and will make an effort to invoke a certain urgency hoping to make posts more compulsory. It has been some time since we actually updated on Charlie’s condition so I will strive to keep this post entirely on point and tangent free.
The inevitable has happened with our boy and he has taken ill. Nothing severe but nothing that is making life any easier. I believe that according to our rudimentary understanding of modern medicine he might have a touch of the flu. A condition you may have heard of that one need not be overly qualified to diagnose. In my experience if you are holding a small one and they begin to heave insomuch that gastric juice is eructed on your person it might be safe to say that some gastro-intestinal distress is occurring oft caused by any number of Influenza type viruses. Sufficed to say Charlie is experiencing this frequent emesis. Grandma Cheryl can attest as she was, this weekend, turned into Char’s personal burp cloth, thrice. The issue that is marginally unnerving is that Charlie still hasn’t developed the greatest gag/swallow so while he is lurching and giving it the old heave ho he chokes a fair amount and is at times w/o breath. I’d be lying if I said that it didn’t freak me out a little bit and cause some panic but w/ a little repositioning, draining and suctioning he seems to recover well. The unknown is how much of this rejected fluid is finding it’s way into his lungs. Aspiration remains one of our largest fears and it causes us to remain cognizant of his every breath. It is increasingly arduous to get any quality sleep when you are constantly watching the rise and fall of your little boy’s chest.
Aside from this current affliction Charlie continues to do well at home. Of course he has days both good and bad but a trend of more good days is slowly starting. We are trying to get him out on regular walks around the neighborhood not only to get some fresh air but also remedy his “Casper the Friendly Ghost” like complexion. Going w/o the sun for 4 months has left him w/ a pasty like tone that makes his mothers legs look ebony. We love having him home and I love having a snuggle buddy and a perfectly appropriate excuse to sit in front of the TV for hours at a time. Neurologically his condition remains somewhat the same. His only real purposeful responses are to pain or discomfort. We continue to hope that this will improve.
Thanks again for all of your continued support and huge kudos to Troy for putting together the race videos. I am of the school that his videos are the coolest things on this blog and hopefully I can milk him for a few more in the future. Troy is a true cinema graphic technician and only if I had the early Lake Powell videos you could experience the full gambit of his expertise. Strong work Doyt.