What to write?

I struggle with what to write some nights. I have a lot to say, there are lots of thoughts…lots of thoughts bouncing around my head…I could share but I’m stuck with what to write. I’m stuck because this isn’t a diary or journal…it’s a blog. It’s public. Of course this isn’t a shock, we all knew this going in but it was supposed to be about Declan, his journey and his miraculous cure…not about the grieving ramblings of a Mommy trying to make sense of something she (we) should never have to. My child died, I should write what I want…I mean, really, who would blame me? But it’s more complex than that. I’m writing about intense pain…and people are reading it. People I see everyday or the ones I don’t but they know me (us) and what a scary thing to read when you can’t do anything to change or fix it. I know it would kill me to watch someone I love go through something like this. So I try. Some nights, however, the words are better kept inside…like tonight.

I will tell you this…it’s so much harder than it looks. So much. The feelings are twisted and tangled and tumbling all over themselves…and those are the ones you see. The ones that sneak up on you, well, those are just a whole other ballgame.

In the midst of all this…well, grief there is something that hasn’t left. It is hope. It’s not the Hope Diamond of hopes, mind you, but it’s there. The hope I have for my boys, my husband and our of life together as we navigate the death of Declan. Somedays it’s hard for me to see (like the past two) but I got a sign today and while it didn’t ‘cure’ me, it gave me a smile, a comfort and something to hold onto…I found my Dime Story.

Huh? What in blazes is she talking about? Well, I’ll tell you. I first read this story in Houston. It was about a young man who before he died said he would find a way to let his family and friends know he was ok after he died. After several months various family members had separately amassed a lot of dimes. They seemed to show up in the oddest places…they believe it was the young man. The person retelling the story had similar instances where a dime would appear at just the right time…right when he needed it. I got mine today. Yesterday was a huge struggle…Valentines was just too much and it wiped me out afterwards. As I was leaving for an appointment this morning, I was walking to the car…literally crestfallen….and on my driveway, I walked past a dime. It didn’t register at first but by the time I got to the door, I remembered the Dime Story and decided I needed it. When it bent to pick it up, I caught a glimpse of another one…2 dimes on my driveway (and not in a ‘main steam’ traffic area). It put a smile on my face, knowing he was close.

I carried them with me alll day and will probably keep them with me as a reminder of the hope. It’s going to be a long road so I’ll continue to put one foot in front of the other and try hard to keep my heart lifted….with one eye, scanning for dimes.

Picture perfect

I have been dreading today and it has felt about the way I thought it might.  All days hold soft and hard reminders of Declan.  Today is no different because it will forever tie our memories to our 4 boys together and it will always remind us of Declan especially.  You see, it was the first and only time our boys were professionally photographed together before Declan was diagnosed.

Last Valentine’s Day Stan decided to surprise me with two things…one I learned of right away and one I would come to know later in the day.  As it turns out my surprise has been shared with all of you through this Journey.  So what were my surprises?  An afternoon at a hair salon…nails, hair cut and high-light.  Woohoo!  (My hair needed it bad since I hadn’t really done much, other than a trim or two, since before we learned I was pregnant with the twins .)   Little did I know my salon surprise was merely a ruse to get me out of the house and away from my kids long enough for Stan and his Mom to take the kids for a surprise Valentine’s Day photo shoot.

The surprise you have been able to share with me?  The photo so many of you have told me you have of Declan hanging at your offices, on your computer or your fridge at home …the one in the blue sweater with his great big beautiful smile and his deep blue, happy eyes…was from that shoot.

To hear the recount of the afternoon, it was a rough shoot (4 boys, 2 infants…you can do that math on that one!) which ultimately did not wield a great amount of “oh my goodness, what an amazing shot” pics of anyone, except that one of Declan.

As a side note, another one of my favorite pictures of Declan is from that day as well.  You see it every time you come here too…the one in the red heart shirt up there to the right.  We got all the boys together on the couch afterwards in their red Valentine’s shirts that never made it out of the bag at the shoot.  Declan was particularly happy during this impromptu photo session as you can see from the smile.

So today was going to be rough for us, we knew it.  This morning we both kind of gave each other that knowing shrug and half smile…neither one of us wanting to tip the other’s ‘scale’ in the wrong direction but knowing in a glance how much our hearts were hurting today.  Not to say they don’t hurt any less any other day but on a day like today, a day we are reminded to shower those we love with, well, love; it is particularly hard.  A part of our love is gone from our lives and it hurts.

I will always love the pictures from that day and of course the one of Declan but it also signifies a time when things were so different from how they are today.  How blissfully ignorant we were.

A glimpse

A member of our new family, I guess I should qualify that…our cancer family. These are the families who have a child in treatment, out of treatment or are walking in our shoes.  They are families we have come to know (either in our local hospital, during treatment out of state or simply by sharing our stories online) and those we have yet to meet. We are forever joined by the unspeakable world we were cast into after hearing the words, ‘Your child has cancer’.

So I was reading one of my new family’s blogs today where she had posted the words to an Aerosmith song; and as I read the words, I was taken back to those final days with Declan. The words reminded me of how Stan and I struggled to stay awake, to be with Declan every waking (and non-waking) minute of his final days. When sleep was over powering us, taking turns to be with him so the other could catch a few winks (even though we never truly slept). To watch him breathe, wondering if this one was the last one…wanting so much to slow the hands of the clock and yet understanding a world of peace for Declan lay beyond that last breath.

I know I will never truly be able to describe what it was like, I don’t really want to try but I felt like these words offer a glimpse into a fraction of what my (our) minds were trying to process while trying to enjoy our last minutes….knowing that when the time came, we would never be prepared and we would forever lose a piece of us.

And yet in these words also lies the joy we find in having had those moments with Declan and these same moments share with Will, Brady and Cole. Read them and think about them…and then enjoy these moments with your kids. I don’t think I have enough with any of them…I’m not sure it is possible to have ‘enough’ of our kids. But this song is a wonderful reminder to me to savor them as they come along.

Aerosmith ….

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
Far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Well, every moment spent with you
Is a moment I treasure

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, babe
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream will never do
I’d still miss you, babe
And I don’t wanna miss a thing

Lying close to you
Feeling your heart beating
And I’m wondering what you’re dreaming
Wondering if it’s me you’re seeing
Then I kiss your eyes and thank God we’re together
And I just wanna stay with you
In this moment forever, forever and ever

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, babe
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream will never do
I’d still miss you, babe
And I don’t wanna miss a thing

I don’t wanna miss one smile
I don’t wanna miss one kiss
Well, I just wanna be with you
Right here with you, just like this
I just wanna hold you close
Feel your heart so close to mine
And stay here in this moment
For all the rest of time

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, babe
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream will never do
‘Cause I’d still miss you, babe
And I don’t wanna miss a thing

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, babe
And I don’t wanna miss a thing
‘Cause even when I dream of you
The sweetest dream will never do
I’d still miss you, babe
And I don’t wanna miss a thing

Don’t wanna close my eyes
Don’t wanna fall asleep, yeah
I don’t wanna miss a thing