How cool has this blog been? Admittedly when I initially heard about the whole blogging business I gave Angel a load of crap and in not so many words told her it was all “hokey pokey.” Oh how wrong I’ve been. When my thoughtful sisters, Meghan and Susan (what would I do without them?), started this up in the infancy of our stay I looked at it as a way to keep folks in the loop while in the PICU and then it would go away. Obviously it has not, it has evolved into its own beast and I have come to understand that maybe the “hokey pokey” is what it’s really all about. The blog has been a lifesaver for us. Not just in keeping folks updated on the day to day life of our preciously lovable little boy but in providing an avenue for us to reunite w/ old friends and make many many new ones. You all have been so great with you kind words and prayers but your innumerable acts of pure service, many of which I’m sure have gone unnoticed and unappreciated; have deeply affected us as a family. Angel and I feel so undeserving yet unequivocally blessed.
As we undergo Char getting his new ear and with the end of our stay hopefully in sight it is “a time of great excitement where my mind is called up to serious reflection and great uneasiness.” What do we do w/ the Beast that is this blog? Allow me to plead my point and then we will welcome any elucidation and/or remonstrance (That was for you Whit.) in the comment section where only the brightest and most insightful bloggers hang and bum steers and biases are not welcome.
We have sincerely enjoyed sharing our story w/ you all and reaped invaluable insight and support from your loyal interest. Some of you have been kind enough to share your stories here as well and we are so thankful for the support, hope and love that they have provided however the tears that followed we could have done without. In raising Britton, he and I have had the understanding of machismo that you only cry when you’re bleeding, a lot, but now we have discussed that the list of events that necessitate ocular mist has grown. It’s now ok to loose it anytime you get good or bad news from doc’s, randomly reading blogs, meeting The Coach, holding Charlie when he won’t calm down or wondering why this is all happening to such a perfect little boy. I don’t mean to sound trite but there is a certain perspective that comes from having a chronically ill child in your family. Hopefully through this story you’ve been able to glean a portion of that perspective. I think what I’m trying to say is that while here in the hospital we’ve had nothing but time to do things like visit, post and keep up on the ever growing list of blogs we love to often read. But once home our primary concern will be our boys and their welfare. So the real purpose in this post is to plant the seed that when the great day arrives that we get to take Charlie home and be a family again the priority of blog updates will inevitable slide down the list of import. I in no way mean to sound presumptuous like if the blog stops your world will be found lacking, but while attempting to prioritize a future home life w/ some of those closely associated w/ our family the idea of suspending the blog has gone off like a fart in church. So, since none of us like stink on the Sabbath, we’ll keep the blog up but be on notice that update frequency will decline, once a day, maybe once a week and rest assured it is Angel and I whose world will be found lacking because I am confident we enjoy all of your comments infinitely more that you might enjoy our posts. Angel and I are so lucky to have all of your support and prayers but where we are truly lucky is to have a sweet and special boy in our family. A boy that will bless us all to limitless ends every day he is with us. In reality we are so fortunate the Almighty saw fit to entrust us with this perfect spirit and I hope we don’t let him down.
Now feel free to talk amongst yourselves.
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27 comments:
I want to wish Charlie luck tomorrow with the surgery. We will be thinking and praying that the surgeon will be at his best and that Charlie will behave. We'll be thinking of you!
Angel, thanks so much for coming to sit with me on Friday. It was really nice. I hope you have begun your escape!
Angel, I love your blogs. As a social science major, all that technical stuff is a foreign language to me. Rob, well Rob is Rob and we expect no less. You are both rockin'awesome people.
Good Luck tomorrow. I pray it will be the turning point you are looking for. My Sunday School is praying for you.
Bless you, Jill B
let me be the first to say how much I will miss the frequent updates. I am one of the 60,000 + who has grown to love Charlie as if he were a part of my own family. His story has touched me so deeply and inspired me in ways that I could never explain in a comment section. Certainly go home and take care of your sweet little family, but don't forget about all of us when you've got a few spare minutes. Good luck Charlie and family. You are loved way more than you could ever know.
You know me, Rob. Did you have to refer to the church comment?
Robbie, you are a good egg. We love you and your family so much, and while we are an extended part of it, we aren't as close geographically speaking as we would like to be. So the blog will be a great way for us to tune in and see the latest of our boy that we don't see as often as we'd like. It will be great for not only those who know you only through the blog and want to check on Charlie, but those who do know you and even talk to you, but don't get to see you everyday. I know the frequency will go way down, I don't mean to put ANY pressure to do more than you can, I just mean to say that there is such value in doing what you are saying you plan on doing and we feel grateful for that.
We are praying for Charlie for his surgery and know you will be great "at home" care takers of our perfect little guy.
We love you!
The Phoenix Barlows
ps- I think my comments are about as long as Rob's blogs.
my oculars are misting. (correct usage rob?)
i know you will have to suspend blogging, not only to take care of your boys, but to have some privacy and sense of normalcy in your own home. we will all still check in for your semi-weekly blogs... so we can follow that special boy who we love so much and watch his charlie steps...
We have been praying for your sweet perfect little boy, I can't express what he has taught me. We will definitely continue to check in his progress, and we'll be praying hard on his behalf :)
I feel weird leaving a comment on your site, but find myself checking it often to see how your little boy is doing...your situation has touched me deeply. I had a very similar situation happen to me and my family 3 years ago. I too have 2 little boys and the moment my second was born, there were terrible complications. I can sympathize with the ups and downs that come from having a sick baby. and the craziness of the NICU. (We were there for 52 days). I think that you may find once you actually get Charlie home, that life will settle down almost immediately. It may get hectic at first getting things put into place for both little boys and adjusting to life @ home! My husband and I hardly knew what to do with ourselves, without having to run to the hospital everyday, sometimes twice, time just seemed to open up for us.
You have both dealt with everything in such a positive manner. It's very admirable and inspiring. I pray that everything will go well tomorrow for Charlie's surgery.
Elise - Calgary, AB, Canada
I'm just so excited that you all are formulating a game plan for going home. I've read the blog since the beginning and every day when I check in (usually first thing in the morning, before anything else!) I see the picture of Charlie at the top of the page and am compelled to say "I LOVE you, little boy!" Somehow -- and I can't begin to speculate how or why -- he has become so dear to me. I shall set my Blogger preferences to notify me whenever you guys post, be it once a month or once a year, I will be delighted and privileged to find out how your family is doing.
Much love,
Sophie in NY
I'm praying today for Charlie's surgery to be a success. I'm glad to see you talking about going home but sad to think we won't know what's going on day to day, but understand. It's amazing how 1 sweet sweet little boy can join so many people around the world. I bet Charlie will be amazed when he gets old enough to understand how many hearts he and his whole family touched.
Prayers and Hugs from Missouri
Rob, you and your family have done a brilliant job in keeping this blog up to date. However there are FAR more important things than updating a blog. If I wasn't sitting in front of a computer while at work I don't know if my blog/website would ever get updated? The moment I get home from work I spend virtually every possible moment I can with my little girl. I rarely have time to look at the web at home, nor do I want to take the time. Every moment I can spend with my child is a blessing. So basically Rob and Angel, if I check in and don't see a frequent post, I am going to assume that you are (a) playing the black power ranger (b) watching a movie with Britty. (c) reading a book to coop (d) working (c) mastering a song on your guitar (d) changing a dressing (e) doing some physical therapy with coop (f) at a byu football practice saying hi to your coach...whatever it is I will know that no posts are good posts. I love reading posts by you and Angel. Speaking for myself, and my entire family, were here for you and always will be. Love you guys!
ps You and Angel owe us the pleasure of your company on a vacation when the "new normal" has been implemented.
Rob & Angel: Those of us who have prayed and commented understand!! In fact this is what we have prayed for!!!!!! Thank you for sharing Charlie's jouney w us. Looking forward,not back. Rest Assured you can not nor will you let Charlie down. Good Luck Charlie today and always. Shyla from MT
Rob & Angel,
In considering your transition to home I have something I would love for you to have if you might want it. As I have seen Charlie enjoy that hammock/swing in PT thinking I need to let you both know that I purchased a swing that is similar to a hammock in function that has its own huge swining blot for attachmentto a huge beam. I would love to give it to your family for either of you to be able to swing Charlie or place him in it. Please let us know, we will get it to you ASAP. I have never used it so its yours if you want.
Love & prayers,
Nolan & Dawny Aders
email:info@burlandbeyond.com
Well can I just say to you Rob that I LOVE words, and you have used a couple that have left me in a dither, running to my huge dictionary to check them out (how ignorant am I anyway!!??) I have so enjoyed keeping up on Charlie's ordeal as well as the rest of the fam. I have never met him but feel like he is one of my grand children. Funny how when you become a grand parent ALL the little ones feel like our own! My thoughts and prayers will continue for you and your sweet family, you have given much more than you may ever know to others by sharing your trial, thank you so much! Love and hugs to you all!!
I can't imagine my day without getting my fix of Charlie updates, and it makes me happy every day to see how much better he has been doing. However, once he goes home I know he's in good hands and will be happy to know you guys are all getting back to some sort of normal. Just as long as there is something occasional when he has a developmental step would be great! Good luck today!
I recently stumbled across your blog as I was researching pneumococcal meningitis. I have a friend whose daughter (her name is Charlotte but they call her Charlie) recently contracted it and is currently on the rollercoaster ride you have/are experiencing. I plan on passing along this site to them--I hope you don't mind. Your site has been very informative and encouraging. Thank you for sharing your story and I am praying for Charlie and your family.
Jessica from Minn.
PRIVACY?!? You don't get no stinkin' privacy.. ;) J/K!
We're praying for a quick and easy surgery today. Please know that our prayer *every day* has been for Coop to go home and be boring enough NOT to warrant any more blogging.
That said, we'll continue to check in and hope for more adorable pictures and updates. If nothing else, we'd like to continue to send ((cyber hugs)) through your new walk.
Love,
Steph Miles and Family
I am a big fan of Charlie, although we have never met. I think he is blessed to have such a great family and you are even more blessed to have him. I will miss the blogs about him. Personally, I am not a blogger. In fact, I rarely go to blogs, but Charlie is special and something struck me about him. So while I'll miss the frequent updates, my hope and prayers for his success in this life will continue. So thank you for letting me in your lives to check up on this special boy. I sometimes I feel weird, maybe undeserving is the right word, of commenting here and there about your little guy because I have never met any of you. But for what is worth, there is something about Charlie that is extradorinary....and I am not the type to throw that word around or fee that way about a person I have never met.
With that, I really wish your family the best. If not blogging and having more privacy is what needs to happen to dedicate you lives to your family then I wish you the best! I will always pray for him, his progress, and for your family.
Although I have only met little Charlie one time I find myself thinking of him many times throughout the day. It has been so nice to be able to pull up the blog and get the latest update. However, I am so happy that he will be going home soon and understand that family time comes before the blog. Good luck with everything. We will continue to keep you in our prayers!
WOW! That's all I have to say. Reading the post and comments in awe inspiring in and of itself. I've told you many times how you've touched my life, changed me, and inspired me to be better. The marvel of it all, is that in my changing, I've tried to share that perspective with all around me. So really, you may have touched 60,000+ lives on the blog, but think of the lives you've touched by touching those directly around you. The world can be changed by one person, so thank you for sharing that one person with us. We love Charlie. Many prayers and much love today.
Love
Rox
Good luck in surgery Charlie! And if you guys get sick of posting when you get home, but still want to keep people informed, I happen to know of someone with ADD who over-posts and would be sure to keep the peeps in the loop. I will have to see if she is available. Pretty sure she is though. :)
i will miss the frequent updates. charlie has touched and changed my life. doug and i thank you for sharing. we look forward to hearing about charlies "charlie steps"
Oh, I have experienced much misty innoculations reading this post.... oh wait, rob did I use this wrong?
Speaking of innoculations, did Charlie have anymore before he went in for surgery?
Rob, you have never apologized for being presumpuous before, why start? I can safely say that from my perpective, this blog has been wonderful in so many ways. Thank you for taking time to keep all of us updated on even the smallest of drools. He is such a special kid and has touched so many lives, I think all I can ask for is that Coop, Britt and you two can return to your home and start getting back to "normal", the new Charlie version. I've had fair warning that I will need to wean myself from the daily updates. I just hope their are many days that have new things that Charlie is conquering but blogging them rather than celebrating them is low on the "to do" list. Rob and Angel, I'll say it again, I'm thoroughly inspired by both of you. Good luck today with the surgery, give him a kiss on the belly for me.
p.s. rob the big words were about 12 hours too late, 3 of those hours spent in spiritual worship, but thanks for trying.
I feel as if I know little Charlie from reading your blog. I have been along for the ride since the beginning of his illness and like so many others, will miss the updates on a regular basis. That being said...I feel honored to have been allowed this little glimpse into your family. Going home has been the prayer from the beginning and once you are there you will have to live your lives. I think most, if not all, of us in blogosphere understand that.
If you can find time to update us once in a while that would be great. I would really love to know how his life progresses. I have a feeling great things are in store for this little guy, and his family. But, I can also respect your need for privacy and will honor your need to keep his struggles, accomplishments etc. within the privacy of your own family.
It is my selfish hope you will continue to blog occasionally.
With much love,
Your friends in Erie, PA
you shouldn't feel like you have to inform us all on your lifes and what is happening! It has been great to be a part of your amazing and trying experience and of course we will all keep checking in...but really you are right, your family, your future, and your sons are your priority. Whithout them you would be nothing...and we wouldn't be reading this blog. I would love to hear updates...even monthly would be more than expected! YOu are doing the right thing! Go have fun with those cute boys of your!!!
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