Heavy

I had a very funny (in my opinion) post all planned out in my head. While waiting for the pictures to download and edit I surfed the web and came across this...

http://laylagrace.org/

Suddenly I'm just not feeling the funny post.
As hard as things are for us some days and as much as I cannot imagine my life without my husband I simply can't fathom what these parents must be going through tonight.

Everyday I face the reality that at any moment Scott could be gone.

I have imagined every way conceivable to hear the news of his passing. I've had "the phone call" in my head, hell I've had it out loud with myself in the car on the way to the hospital. I've dreamt about it. I've had moments when Scott was home that I've woken in the middle of the night and Scott is sleeping so peacefully that I can't see his chest rise and fall. I've put my hand to his chest expecting him to be cold only to feel the warmth of his skin and the shallowness of his breaths.
For all the "preparation" I've done I can envision the moment of the loss but I cannot imagine what life looks like after that. I can't figure out what happens after. How does life move forward without him?
I simply cannot imagine not having him here. I know it will happen but I can't prepare for it. I cannot envision it.


How must this family feel? As much as losing your husband is brutal, horrible and life altering the loss of a child, a beautiful little girl just about Kate's age, with so much left to accomplish.... that is something that nobody should ever have to prepare for.

My heart aches tonight. It aches for baby Layla, for every sick child, for every parent that has ever lost a child... My heart simply aches.

I promise you guys tomorrow I will be back with something funny. Tomorrow I will show you Scott's new tricks. Tomorrow we'll rejoice that we have another day together.
But tonight, tonight I'm going to go sneak into my daughters room and watch her sleep. I'm going to listen to her precious little snore. I'm going to envision the full, healthy life she has ahead of her. I'm going to sit and feel grateful.

Anonymous –   – (February 23, 2010 at 11:06 PM)  

I wish I could articulate just how heavy my heart becomes when I think of you and Scott..I wish I could envision some poetic passage that would not only summarize my love and support for you guys, but would erase all the complicated emotions that surround Scott's situation. I wish I could explain my unease every time I open the blog, terrified that you'll have written that Scott has gotten worse. I wish I could share with someone how even through eighteen credit hours, work study, and preparing for drum corps you guys still pass through my mind at least once every hour - that someone could explain why my nervous system feels like it's been replaced with molten lead every time I even try to picture the worst - that after not meeting you and Scott for fourteen years I can't picture life without you, him, and Kate.
Funny how the strongest kinds of love can't be accurately put into words...
Hang in there B, we're all pullin' for you, him, and Kate.
Love, Ellie

Anonymous –   – (February 24, 2010 at 8:34 AM)  

Young healthy GOOD people die every day. Health, age, gender, potential, odds are that people are suddenly devastated daily maybe every minute....
That being said, The torrtcher of fighting Ehlers Danlos Vascular with Scott for years and knowing the statistics, has got to be utterly in every sense absolutely exhausting. Scott is so worthy of another 100 years and not missing a single moment of Kates life. You are living a torrtcher we could only wish to be bottled and given to heartless criminals.

I have said to my mom and my husband, I know that Brandi has given us this last 1 plus year with Scott. She was the one that advocated for him and took on (VEDS) head on.
Yes, Scott is fighting his hardest along with the good, brave, & brilliant doctors and all the stars are aligned. But we have ALL said "Thank goodness Scott has Brandi" !

So back to the beginning of my comment. Yet again, I will say - Always kiss the people you love goodbye, take nothing for granted, savor every moment, & make good things happen.
Jay'me

Anonymous –   – (February 24, 2010 at 8:35 AM)  

Young healthy GOOD people die every day. Health, age, gender, potential, odds are that people are suddenly devastated daily maybe every minute....
That being said, The torrtcher of fighting Ehlers Danlos Vascular with Scott for years and knowing the statistics, has got to be utterly in every sense absolutely exhausting. Scott is so worthy of another 100 years and not missing a single moment of Kates life. You are living a torrtcher we could only wish to be bottled and given to heartless criminals.

I have said to my mom and my husband, I know that Brandi has given us this last 1 plus year with Scott. She was the one that advocated for him and took on (VEDS) head on.
Yes, Scott is fighting his hardest along with the good, brave, & brilliant doctors and all the stars are aligned. But we have ALL said "Thank goodness Scott has Brandi" !

So back to the beginning of my comment. Yet again, I will say - Always kiss the people you love goodbye, take nothing for granted, savor every moment, & make good things happen.
Jay'me

Anonymous –   – (February 24, 2010 at 3:36 PM)  

Brandi and Scott,

I want to tell you something that I remember from your wedding day. At the reception, I looked over at the two of you sitting together at your little table. I remember thinking,"Hope is really the only thing we have going for us in this life, and that right there is the embodiment of Hope itself." This scene and this thought remain in my memory like a photograph, just as golden as it was at that moment.

You did not give up on hope or love or joy, despite the incredible odds. There are people who would give up on life itself over far more minor things than this. Those people are bereft in a way that you will never be.

Hope is eternal, love is eternal and the human spirit is eternal. That is what carries us through tough times, and shines a light when the path ahead seems bleak and full of doubt.

I keep all of you in my thoughts daily,
Christine

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