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Saturday, October 9, 2010

This post.... this post has been rolling around in my head for so long.  It keeps getting pushed to the back and then I find it at the front again, begging for attention.  So here it is.... I've got to get this out.  

Waaaaaay back in August, I read an AMAZING post written by Meri called One of Those Moments.  It spoke to me in a way few things do.  I can't do it justice.  Just go read it for yourself.  I'll wait.....

This post made me laugh and it made me cry.  And I think about it all the time.  Still.  Two months later.



First, I LOVE this:
But since those three fateful days when my worlds as I knew them were knocked off their axis, there have been an armful of moments that just as suddenly, jarred me to my very core. Like aftershocks in the earthquake of diagnoses. In these instances my true priorities were made clear. Most of these moments lasted just seconds, but their grasping influences left imprints that forever changed the way I look at my life.

Aftershocks in the earthquake of diagnosis.  How true is that?!?  I feel those aftershocks still....some are stronger than others.  But they are still there.

But that's not the part that REALLY gets me.  

No.  The part that really gets me is after talking about how, due to confusion, one son had not had his bg checked overnight.  He'd been going low every night... and he was still sleeping... later than usual.  As parents of CWD's we immediately feel the hairs stand up on the back of our neck and we get goosebumps.  Because we KNOW....

It's when she says this:
Why must we stare our children’s mortality in the face on a daily basis? What purpose can this serve?

I honestly feel there IS a purpose. Without these kinds of moments...the world wouldn't have nearly the amount of good that it has. Once you get a glimpse out the window of what could be…the sadness of losing a child, a friend or a loved one…or once you see firsthand another human being suffer…you are changed…period. Priorities are changed, views are changed, what seemed important before just isn’t important anymore.
I think that I have been trying to say this... trying to explain this... well, since I started writing this blog over a year ago!  

I think I'm always trying to explain this - and I never feel like I quite get it right, like I convey the right message, like I make it clear.... And I keep writing post after post about this... just trying to explain.

That's why I started writing at all.  I want people to know about T1.  I want them to GET IT.  I want them to see that it's not this easy peasy disease that is no big deal.  I want them to see the TRUTH about what it does to all of us.

And it's so hard.  Because if you don't LIVE this life,  you can't really understand what it's like.  You just can't.  I don't mean that in a condescending way... it's just the truth.  

I keep trying to explain.... I'm not the same person that I once was.  I look the same.  I like the same things.  But something inside of me has changed.  You can't really SEE the change.  But it's there.

Interestingly, I talked to J about this today.  He says that he does not think he's any different.  He says that he "just has more to do than normal people to take care of my child.  But the core of me is the same."

Maybe it's a guy thing?  Because the core of me is not the same.  

Maybe that's why it's so hard for marriages when a diagnosis (any diagnosis) happens.  It seems to either strengthen you or tear you apart.... and we are lucky and blessed that it brought us closer and made us stronger.  But it saddens me that not everyone is so lucky.


The core of me is NOT the same.  I can't think of many things that D has not touched or changed in some way.  I may do the same things.  I may have the same friends.  I may watch the same TV shows.  I may read the same kinds of books.  I may shop in the same stores.  But my core is different.  

When you stare your child's mortality in the face every day, it changes you.

"Once you get a glimpse out the window of what could be…you are changed…period. Priorities are changed, views are changed, what seemed important before just isn’t important anymore."

How do you explain this to someone when you LOOK the same?  How do you explain this to people when you ACT the same?  

Everything changed for me on April 27, 2009.  

I woke up that morning one person and I ended the day as someone else.  

Honestly, it's been more gradual than that.  Slower.  Taken more time.  But it's happened, nonetheless.  

It can be frustrating.  When people expect you to care about things that are just no longer on your radar.  With D, there is so little time and energy left over at the end of the day that you have to be so particular in what you spend your "free" time on...

It's kind of like when you have a baby.  In one instant your life changes forever.  And it's hard to explain the enormity of it to someone until it happens to them.  Same thing.... except not.

Even now, it's so hard to put into words.  

And I wonder... what would Sweetpea be like without D?  What would our lives be like?  Would she be as spunky?  Would she worry like she does now?  How has this changed and shaped her life?  We'll never know.

Today, I can only speak for me.

I grew up on that day.  I matured faster than I would have without it.  I realized how fragile life is.  How precious.  How little control we really have.  I experienced fear, pain... trauma... My dreams changed.  My future changed.  My hopes and goals changed.  

My heart was broken on April 27, 2009.  

You can't really see it.  You could never really see the million little pieces it broke into.  You may not have guessed.  You may not have noticed.  

But slowly, I've pieced it back together.  Super glued all those little parts.  

It's not as tidy now.  It may not be as pretty as it once was.  But it still works.  I can still LOVE with it.  I can still FEEL with it.  It still hurts sometimes.  

But just like with broken bones, when it mended - it became stronger.  

No, I'm not the same person I was.  I am a new creation.  And that's not such a bad thing. 

(and I STILL don't know if I got it right... if I explained it right... if I said enough - or too much...)


  1. You nailed this one.

    Included in the invisibility of D are the changes that take place in us, the parents of CWD. Jack's diagnosis forever changed me. I'm not the same person I was before D entered our lives.

  2. i am crying. amazing post! i actually wrote one similiar but its not posted yet. anyway with our dversary coming up ive thought alot about this. im proud of who i am now but it has made me less tolerant of other peoples petty bs. the "fml my son has a cold" on fb makes me mad. ppl need a glimpse of whats really going on. is that mean? idk :\ xoxo

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  4. I was nodding during the entire post Hallie, and not just at my quotes. :) The ENTIRE thing. Amen. And your point about husbands and wives...double amen. I'm glad you listened to the little voices and blogged it out. This is a great one friend!

  5. Hallie, you put it into words perfectly. My heart was broken as well, and no one understands why I'm not "back to normal" yet. And I'm finding myself very angry with certain friends who expect me to worry about silly things when I have no energy left over to even care about them. Great post!

  6. YEP...changed. NOT the same. I am glad I finally got my sense of humor back. I lost that for a solid year and a half after "d" entered our lives. But, I was sad, unanimated, now...I let it all hang out there. Judgement be damned.

    Love you and your strong super-glued heart Hallie.

  7. Staring mortality in the face EVERYDAY. I seriously couldn't put into words what I felt, what I feel everyday. This is it. I stare at Lovebug's mortality everyday. That is why I am different. You have a way with your words Hallie, a way that touches my heart deeply. Thank you so much for writing this post and sharing your heart.

  8. The words "staring mortality in the face" made me hold by breath as I do throuout the night and every morning until I see some form of movement. Its a harsh reality that a chest rise can put the breath back into me.

    Well written Hallie.

  9. Beautiful post, my friend. Keep 'em coming!

  10. This was beautiful and moving. Ive not blogged in a few weeks because I just cant find the words to say what I feel. THANK YOU for putting some of this down! YOU ARE AN AMAZING WRITER

  11. What a beautiful post! It's all so true. Thanks for your honesty!

  12. You said PERFECTLY what I couldn't find the words to say.

    Wonderful post. Very well said.

  13. Hi! My name is Nicole...long time lurker, first time poster...

    Hallie this post was perfectly written...especially from the mama point of view! I thank you for giving a voice to what I still quite haven't been able to yet.


  14. Thanks guys! It's hard to explain... but so true! Love to you all!

    HI NICOLE! Glad you've moved from lurker to poster.... and glad you like the blog!


Thanks for commenting! Comments = Love


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