Sunday, March 11, 2012

March 11, 2012: Long one...



Heaveno!

Thank you to those who commented on my last post.  I really appreciate the support.  I laughed when one commenter wondered how many words I had typed in the past 3 years on this blog... good question!  I wouldn't wanna count.  Throughout this journey, the so-called reason for this blog has evolved.  Before Bella was born, I knew of blogging, but had no interest in doing it myself.  Main reason was that I considered myself too busy living my life to take the time to write about it.  Besides, who would even care?  Lord knows how many blogs are out there, why would anyone or how would anyone find me and wanna read my ramblings?

Then Bella arrived.

It was after three days of insanity in the hospital trying to get cell reception, watching my battery get sapped from trying to get a signal all the time, trying to return calls that went straight to voicemail, etc... that our social worker told us about carepages.org, which is a lot like caringbridge.org.  We set our little page up the next day to let friends and family know what was happening in the hospital, since voice to voice and email to email communication was just too complicated and time consuming.

Then, people started writing back, and a conversation started.  It became this cycle of love, support, information, and inspiration.  I wrote, people read, people wrote back, Ang and I read.  Every night, the last thing we did in those early days was read the comments.  It gave us the spiritual energy to allow our minds to switch off and let our bodies rest up for the next big day.  Then, we tackled that day with love, partnership, faith, and trust, and came home and told you about it.  Then, you wrote back, and we read.  Filled back up, we slept, and awoke readier than we would have been without you, and did it all over again.

It has always been a conversation.  Sometimes, when there are only a few comments, I have to admit, I get a little sad.  It's as if I'm talking to someone and they just aren't replying.  Combine that with the fact that there are more than a couple of people reading, and I began to think, "Hey, wait a minute.  I'm reaching out, but who's reaching back?"  For those that have been reading since Bella died, you'll remember I was really pushing and exploring the social boundaries of the blogosphere when we were on the road traveling the country looking to meet Bella's followers.  I think the blogosphere is a fascinating social evolution.  I think we are still in its infancy, and establishing what are the norms for the 'rules of engagement.'  I know I've said all along, "Hey, I'm new at this.  I don't know if there is "a right way" that we are all supposed to act on here, but this is how I'm gonna do it, and I hope you stick around."

Thank you to all of you who have stuck around, and thank you particularly to those who have talked back.  I've always said, "It's not what you say, it's THAT you say anything in the first place."  I used to say it a little blunter... Don't be a lurker! LOL

Moving on...

Well, family Ringgold has survived week one of three on the road... Ang was in New Jersey this past week and leaves for Florida tomorrow morning.  She comes home on Thursday, and then we have a week together, then I leave for Utah for 5 days.  Our work schedules have been so intense, we haven't been able to talk much about or work on a MASSIVE new campaign in the EB world...

Apology...


I apologize; I have been asked to not talk about the news just yet.  I jumped the gun last night and shouldn't have.  I posted details that I have been asked to remove at this time and I happy to do so.  I apologize to all parties!   Sometimes I get myself in trouble with this thing (my mouth...).

Much love to you.

God night.










21 comments:

  1. Hi Tim and family!
    I am afraid that anyone who thinks that you are "all about money" has never seen a hospital bill before so they must not understand the costs involved in modern medical care and research, much less extraordinary measures medical care for extended periods of time. I work in insurance and I see medical bills on a daily basis. The cartoon image of someones eyes popping out of their heads has probably actually happened to me on numerous occasions before, lol!
    There are many, many wonderful causes that need to be supported. Cancer research has such great awareness and organization (I think we all must know someone who has fought cancer, my mother passed on in October 2011 from cancer) and therefore great fundraising capabilities. It's easy to be passionate about something that you have seen with your own eyes.
    I honestly can't think of a more worthy cause than EB. It is time for EB to come out of the shadows and get its time on the main stage and a more appropriate level of funding. I believe if more people knew about this disease they would want to help, how could they not?!? I am trying to do my part to raise awareness and will consider your challenge for raising $250. That should be easy-peasy!
    Have a great week!
    Kelley

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  2. Hi Tim. I'm still here. I love this blog conversation although I think I don't add anything interesting ...
    I have become addicted to your blog and I check many times per day if you wrote something. I appreciate the time and effort that you put in it. .
    I admire your work to find a cure to EB.
    Beautiful pictures as always.
    Love,
    Mariana,UK

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  3. Love your family! Glad you are here.

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  4. Beautiful photos, thank you for sharing them. Just letting you know I am here and reading. Your story continues to inspire me. You have faced the worst that any parent would ever have to face and yet instead of simply pulling the covers over your head and giving up (as you'd have every reason to do) you have moved forward through the worst pain imaginable to continue to love and parent and do good in this world. That, to me, is simply amazing. Thank you for sharing your life, your struggles and most of all your beautiful Bella. You will probably never know of all the lives you have touched and people you have inspired.

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  5. Beautiful photos, thank you for sharing them. Just letting you know I am here and reading. Your story continues to inspire me. You have faced the worst that any parent would ever have to face and yet instead of simply pulling the covers over your head and giving up (as you'd have every reason to do) you have moved forward through the worst pain imaginable to continue to love and parent and do good in this world. That, to me, is simply amazing. Thank you for sharing your life, your struggles and most of all your beautiful Bella. You will probably never know of all the lives you have touched and people you have inspired.

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  6. Just thought I'd de-lurk and say hi :) I've been a reader for a while, but never know what to say or how to say it! Thanks for sharing your journey with us all - it's been a wonderful adventure. :)

    Renee (from Wisconsin)

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  7. I can't believe how big Julian is getting! Wasn't it just yesterday you were telling us that you were going to be parents again!!??!!

    You have a beautiful family!
    Kim M
    Waterford, MI

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  8. Always reading, always thinking of your family...

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  9. Hi Tim - I'm still reading! I don't check in quite as often as I used to but I'm glad to read what you have to say about life (and see pictures of your cute, sweet kiddos!) Keep doing what you do and checking in with those of us on the blogosphere when you get a chance. :)

    Stephanie
    Houston, TX

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  10. Had to laugh at the "lurker" comment. I am almost a professional lurker! I have been following your blog or a while, and the questions and discussions about faith, marriage, family and endless survival have touched me profoundly. I "replied" in my mind, but never had the guts to actually respond in writing. So, from now on, I will. Be careful what you ask for, hahahahaha.

    Lilia B.

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  11. Your "world" seems to be crazy busy. I bet you treasure those days at home with Julian even more. :)

    Our conversation has always been one that I have treasured. I never imagined a blog could lead to friendship (because of these conversations) and even heartbreak. But it has and it did and I am forever thankful for both (if that makes sense).

    Life here has been busy too. I have jumped into a challenge at my local gym. I have lost 25 pounds and will be doing a 5K in April. I never imagined this when I first started. It has been the hardest thing I have done physically in my entire life. But it is so worth it.

    Sending my love to all and sweet kisses for Ali and Julian (he is getting so big:)).

    Denise Wi

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  12. Hi Tim: I am still here reading your updates all the time. I just love following your family and seeing how everyone is doing. Julian is getting sooooo big and of course he is adorable. Tabby is getting big too. It is so cool that they were born the same week. They have a lot in common, a big sister watching over them from heaven. You can't beat that my friend. Take care and give that sweet family of yours a big hug for me. Love and Peace, Leah and Tabby's Nana

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  13. A wonderful blog. I've been reading for a very long time and have enjoyed your "ramblings" very much.

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  14. I've been reading your blog and following your family for a very long time. It's like your 'family' , one who lives far away and thus I keep up with you thru your blog. Sending wonderful thoughts to your wonderful family.

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  15. HI! Just wanted to say that we love the pics of everyone! Hope that you all continue to do well and stay healthy. We are always thinking of you all...

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  16. Hi Tim!
    I posted a comment on the very day you wrote the post, and thought I was actually the first to comment given our time difference, but my comment is nowhere to be seen!
    anyways,
    in a nutshell what I wrote was,
    1) Thank you for keep posting and doing it because we asked you to keep inspiring us, even though you are burned out
    2) julian is a little ang mini me
    3) so happy about your fund raising news, will see how I can help from overseas.
    christiana (cyprus, europe)

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  17. Tim, I LOVE reading your blog. Got here through Tripp and stayed because I love your family. Thank you for reaching out to us and I pray your new endeavor results in a cure for EB!!

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  18. no matter what you share, i really enjoy reading your blog. thank you for your continued efforts. as far as getting in trouble with your mouth, i am a fellow sufferer of that malady! lol

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  19. I am so glad you continue to write. Your blog is wonderful. I just finished reading your book, and I have to say it is the most inspirational and love filled thing I have ever read. Thank you for sharing that journey with all of us. I can see Bella smiling down from heaven so very proud of her family.

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  20. Im still here reading ur updates =) Still so tuched by ur story... <3

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  21. It was awesome getting to Ange two weeks in a row. I cannot beleive how big the baby is! Best to all of you!!!
    Tina in NJ

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