Because of Julian

I’d like to introduce you to Julian.  He passed away about a month ago.  He was 4.  I found his site on another blog, and was captivated by his story.  His mother just has a way with words.  Her journal entries captivated me.  Initially, I resisted checking out Julian’s website.  Who wants to read about a sick child?  It’s too heartbreaking, and I have enough problems of my own.  It’s easier to deal with if we don’t have to see it.  If I don’t see it, I can pretend it isn’t there, that it doesn’t affect me.  Isn’t that just human nature?  The proverbial “it’s happening to someone else and not to me, so I don’t need to care” syndrome.  We feel that way until it’s us, and then we can’t understand why more people don’t care.  So I went to www.carepages.com and registered.  I went to the “juliansworld” carepage.  I read through some of the entries.  I wept.  Julian’s mom has a wonderful way of capturing, and sharing, what all of us would feel if it was our child suffering.  Her posts weren’t the stale entries of a clinician.  They were the outpourings of grief, sorrow, hope, and joy.  I’m not the kind who can wear their heart on their sleeve, but Mimi is.  Not only did she wear it on her sleeve, she splashed it all over “juliansworld.”  I thought, when Julian died, that Mimi would stop posting to the carepage.  Oh no!  She even shared her thoughts on what not to say to a grieving parent.  Kindly, but honestly.  She’s like a tenderizer for the heart.  I came to greatly admire her.   

So I got this email update the other day, and decided to share it with you.  I copied it directly from “juliansworld.”  I didn’t want to paraphrase anything, and besides, Mimi doesn’t need anyone to speak for her – she is wonderfully eloquent all on her own.  I cannot encourage you enough to visit the site, or to get involved in any way you can, even if it’s just to goad your elected officials to provide funding for pediatric cancer research.  Until I got this update, I had no idea that childhood cancer was so pervasive.  It may very well be your child who is diagnosed one day.  Childhood is hard enough without dealing with cancer too.  So is parenthood.  I simply can’t imagine what it’s like to watch your child suffer like that.  I can’t make a cure, but I can support those who are trying to.  Maybe you will feel compelled too.

 

Mimi wrote:            

“I miss him . A year ago , nothing was wrong with him , or so we thought…Today he is gone.
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a year ago
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12 hours before he died

 
Does this seem normal to anyone??

 
Do you think we (and our children) can make a difference? Do you think you can?
Of course !!! just giving blood is a big help…
here is another way, a good friend is trying hard …

“The Conquer Childhood Cancer Act of 2007 is now being considered in Congress. This bill would provide much-needed funding for pediatric cancer research.*

Please contact your elected official, and urge him/her to get this bill on the floor for a vote soon.Even those officials who support the idea need to take action to keep this bill alive.Here¢s how you can help:
START HERE:
http://capwiz.com/curesearch/issues/bills (or http://tinyurl.com/2hpeej)

 
Click on S 911 (Senate version of the bill) or HR 1553 (House version).

 
Enter your zip code on the next screen.A new window will identify your local members of Congress.

 
From here, it¢s simple:type in your name & address and instantly send a pre-written email to your elected officials (or print it out if you prefer to snail-mail).

 
If you like, you may customize your letter, reminding your leaders of these facts:

  •  
    Cancer remains the #1 cause of death by disease in children.
  •  
    Every year in the US , 12,000 children are diagnosed with some form of cancer.
  •  
    35% of these children do not survive.
  • Cancer kills more children than asthma, diabetes, cystic fibrosis, and AIDS combined.
  •  
    1 in every 334 children will be diagnosed with cancer before the age of 20.

 
Thank you for helping us.Childhood cancer is too important to ignore.And we really do believe that together, we CAN make a difference!

 
Sincerely,
Donna G and the other members of Johnny¢s Angels
* You can read more about the Conquer Childhood Cancer Act of 2007 here:
http://www.curesearch.org/news_and_media/news_article.aspx?id=4612
* Want to know if your local Congress member supports the Conquer Childhood Cancer Act of 2007?
Go here:
http://tinyurl.com/ytsst8
Thanks
Make a difference….
Mimi”

 

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Categories: Hope, Sadness, Thinking out loud | 3 Comments

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3 thoughts on “Because of Julian

  1. Pingback:   Because of Julian by medTRIALS.info

  2. Thank you! we liked the mat tenderizer part.

    Seriously, we want people to open their eyes and hearts to this. So many tims we have heard people say they had heard our story then learned their own child or a friends had been diagnosed. we can say that as well. before julian got sick, we saw other kids….. but it cant happen to us…. I still cant beleive it happened to us, to juju. How can it happen?

    It can happen because we are not fighting it hard enough.

    Washington needs to be told. Families need to be supported, and kids need to be loved, appreciated, and cherished, with or without cancer.

    Like

  3. Mr. Avery – Thank you so much for visiting my page! I am honored.

    I wish I had those answers for you, about how can things happen. Lord knows I’m not unfamiliar with grief and sorrow either, and how they can rend the heart. I can only send you e-hugs, you and your lovely wife. I was so moved by both your carepages posts. You have a way with words too! 🙂

    We can only try to spread the word, right? Run the race with endurance.

    You both, and your family, have my most heartfelt sympathies.
    Many hugs!

    Like

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