Reflections and a New Year’s Request

As I sit here and try to comprehend the year that we have had, I am struck with the rolling emotions we have felt and endured.  I will try as best I can to encapsulate it as I, myself, am still trying to wrap my brain around it.

2010 was to be the beginning of a new era for the Carmicals…we were coming out of the “parent fog” which seemed to surround us after the first few months after baby…much less two!…as well as caring for our older two.  The economy, while still tough, was turning around; the world was ours and we were ready for it!

We were stir crazy after the “snowmaggedeon” in the early months of 2010 and with the H1N1 looming, we had kept pretty much to ourselves to protect our little men, especially the preemies in the crew!  Early March the weather seemed to “break” and we headed outdoors for a nice stroll and some fresh air.  The all American family…just like you, living our lives and ready to take on the world.

As I reflect upon this pic… I’m not sure if they were freezing or roasting :0)

Two days after this picture was taken, Declan was diagnosed with his cancer and our lives took a turn we could never have predicted.  In the days and months that followed, we watched in horror as our baby was put through major surgeries, poked, prodded, struggled with chemo… it’s just too much to even try to recall.  All the while, we existed as a fractured family… half at home, half at the hospital.  Wow, this is not at all what we thought 2010 would bring.

But we made a decision to live for today and to enjoy every piece of what life was being given to us in the moment.  Honestly, some of those moments were beyond the worst but some of them were beyond the best.  We made decisions which we will forever be grateful we made…

…to give Declan a fighting chance and try the Dana Farber protocol which gave us 5 more months with our darling Declan.

…to go to Houston and be together as a family while Declan went through his 6 week radiation regime.  Time that ultimately allowed our boys to bond more and us to know some semblance of a family life in the midst of a terribly fracturing time.

As you all know, Declan’s cancer returned and we were unable to battle the beast any more.  We lost our sweet Declan on August 18th.  The months that have proceeded from that moment have been some of the most dark of our lives.  There truly are no words.  It is unthinkable and indescribable to those who have not lost a child but through it all we have been rallied and supported by such amazing people.  It seemed the joy mirrored in Declan’s eyes, came shining back at us in the eyes of those who love and followed his little life.  You will all never truly understand how all your efforts…both small and large…have helped us survive.  We are so very grateful.  Again, there are no appropriate words to express our depth of gratitude.

We ended our year pouring our hearts, filled up to the rims with grief and an unwavering love of our boys (you see we do this for Declan but we do this for Will, Brady and Cole…so they know life may not ever be what you thought it might be but you can still make something better out of what you have); we pressed forward with the formation of Journey 4 A Cure.  The outgrowth of Declan’s Journey.  His journey is now in our hands and encompasses his story, all the others currently battling and sadly those who will learn their fate in the coming days, weeks and years.  We know this will be our lives work.  We know we will always push forward and fight hard…just like Declan.

As today closes, I ask you for your help (the asking part has never been easy for us).  Would you join us?  Will you walk with us to help all the families and kids?  And if you are still contemplating a last minute donation, would you consider Journey 4 A Cure?  To help us make the difference we know we will make.

I wish you all a wonderful New Year…our first year without Declan in our arms but knowing he will always be in our hearts… and yours.  May God continue to bless you all.

Happy New Year!

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Journey 4 A Cure is in the process of assessing where the funds raised will provide the greatest impact towards finding a cure for pediatric cancer; details are forthcoming.  Our goal for the 1st quarter is to award a significant grant to research programs and to provide assistance to families affected by pediatric cancer.  Thank you for your continued support as we get up and running.

www.Journey4ACure.org


Today is my birthday

I had planned to write about this past year in my life…the good and the bad…but I’m going to save that for tomorrow.  It’s one perk of having your birthday the day before NYE…I can save introspection until tomorrow and no one will know the difference.  The whole combined Christmas / Birthday present thing…yeah, not so much. 😉

Anyway, I wasn’t feeling very much like reflecting today.  I’ll be honest, today was probably one of the worst since Declan died….and I’m not a big “woohoo it’s my birthday” type person.  (I truly don’t mind them or getting older…age is a state of mind to me not a number looming over my head.)  So it wasn’t that.  I don’t know maybe it is because you do tend to look at your life, where you’ve been and where you’re going, on your birthday.  Today I was acutely aware of Declan’s absence in my life.  I didn’t think any more or less of him today than I do every day; I say acutely because my heart hurt like it did in the minutes and days after his death…the constant heavy weight, the kind you can feel when you breathe, is back today.  As I type this, it’s still there.  Maybe it’s him holding my heart a little tighter today to let me know he still loves me…that thought just came to me and it’s a little comforting and disgustingly sad in the same moment.

I won’t leave you with the doomsday report today…There were still some good moments today with my family and friends, new and old, and for those I am extremely grateful; but I’d be lying if I said I wasn’t ready to get this one in the books.  Maybe I’ll dream a good dream tonight…kind of a late night present just for me.  Oh please, let it be a good one.

I heard a song today that really struck a chord. I’ve been playing it over again in my head all day.

Take back the holly and mistletoe
Silver bells on a string
If I wrote a letter to Santa Claus
I would ask for just one thing

I don’t need sleigh rides in the snow
I don’t want a Christmas that’s blue
Take back the tinsel, stockings and bows
‘Cuz all I want for Christmas is you

I don’t need expensive things
They don’t matter to me
What I want can’t be found
Underneath the Christmas tree

You are the angel that tops my tree
You are my dream come true
Santa can’t bring me what I need
‘Cuz all I want for Christmas is you

I don’t need expensive things
They don’t matter to me
What I want can’t be found
Underneath the Christmas tree

You are the angel that tops my tree

You are my dream come true
Santa can’t bring me what I need
Cuz all I want for Christmas is you

All I want for Christmas is you
Yeah all I want for Christmas is you

I know I can’t have you anymore and the truth is, it hurts. I miss you so much.

When once we meet again

Each year I wrap my Christmas presents in our room with the TV tuned to a favorite Christmas movie.  I typically get lucky and there is a classic on like It’s a Wonderful Life or some new fav like Love Actually.  Since I’m a few days early on my wrapping (yup, I’m typically a last minuter) the pickin’s for holiday movies were slim.  Thankfully, I have Love Actually on my DVR and teed it up.

If you remember how the movie starts, Hugh Grant’s character is speaking of how Love Actually is all around us and no where is that more prevalent than at Heathrow’s Arrival Gate.  Then you see folks hugging and smiling broadly as they welcome a friend or loved one into a loving embrace.  And then I got this sense that Heaven must be similar.  I mean we’re promised we will see our loved ones again once we get to Heaven…what better Arrival Gate than the “Pearly Ones” with our loves waiting for us?

I mean wouldn’t it look like that scene?  Wouldn’t love ones be smiling those big giant “Man I am so glad to see you again” smiles you see at the airport?  Wouldn’t little kids come running and jumping into their parents arms?  Wouldn’t old friends warmly embrace as only two good friends can?

I think we’ve all taken part in at least one of those Arrival Gate reunions, right?  Didn’t it feel awesome?  Like the energy in the room was kicked up a few notches?  Imagine what that will feel like when we meet our loved ones again in Heaven.  It gave me such a sense of peace to think of it in this way.

Beyond that, the music (which I never really paid much attention to…I mean I’ve always loved that scene and watching the happy reunions) struck a cord.  ‘God only knows what I’d be without you…’  Certainly in our particular case, God is helping write a new path for us without Declan.  It’s surely not a path I would have EVER chosen but God only knows what I’ll be without you.  So I’ll be following our new path….our Journey as it were…until we get to our reunion.

I included a clip of the final scene here.  It really makes me think about how great it will be.  Maybe it will for you too.   Or maybe it will just make the Christmas holiday reunions with your (our) loved ones, all the more sweet.  Enjoy!  :)

A brother supporting a brother

Today was Brady’s Pre-school Christmas Pageant.  He’s been practicing around the house on his own…his choice because you KNOW I’d be all over it!…and was ready to go.  Unfortunately we got some snow in the DC area yesterday causing the schools to open 2 hours late today which delayed the start; Stan was unable to attend because of a previously scheduled conference call (think bosses and the bosses’ bosses’ boss).  That’s ok…armed with my trusty dusty iPhone and our Flip video recorder I thought,  ‘I’ll perserve the memory for Daddy!’   (Insert hero music here!)

As the kids went up to the alter to perform, another Mom and I snuck up to the front to get a better shot of our little Justin Timberlake / Bieber / (insert your favorite Justin here)’s in the making.  I was manning the Flip with one hand (not too well, as you will see) and trying to take pictures with my other when I realized I had dropped Brady’s head from the frame.  Oops, this isn’t what Daddy wants to see! 😉 As I adjusted and looked up, I was overcome with what I saw.  Brady’s head was illuminated by a beautiful bright yellow light streaming through the stained glass window.  I knew in an instant it was Declan watching his big brother and smiling so proudly at him.  Brady even stopped to look up at the light almost as if he was drawn to look up.  I imagine his heart and Declan’s spirit were sharing a moment.

I’m sure moments like these can be written off in a number of ways but today my heart just knew and it was magical.

I was so proud of my sweet Brady and how well he performed today…and I was equally proud of my little Declan showing up to support his brother.  I have worried about them missing out on each others lives and yet, I knew in my heart it would happen in a special way…I just never thought I’d be able to witness it, until today.

Enjoy!  (Just in case…Brady’s in the green shirt and jeans) :)

If I had known…

If I had known it was the last time I would see your beautiful bright blue eyes, I would have made them wait to put you under before your last surgery so I could look into them one more time and try to convey the depth of my love to you.

If i had known it was the last time I’d see your amazing smile, I’d have tickled you and cooed with you for hours longer.

If I had known how much my arms would ache to hold you, I would have held you for hours longer after you died before I finally gave you to the nurse.

If I had known how much I would miss the feel of your smooth skin, I would have spent more time holding your sweet hand to my face.

If I had known how much I would miss seeing you coo or smile or just sleep, I would have videoed you so much more than I did.

If I had known how much pleasure I would get from looking at pictures of you, I would have hired someone to follow us around and capture it all.

If I had known that I would only have you for a short time, I would do it all over again (except the parts where you were hurting or uncomfortable) because I cherish every minute I had with you.

A obvious and yet different perspective

This past Friday, Stan and I were given the gift of a night off. A sleepover as it were! It was truly something we needed. With Christmas upon us, we decided to spend our afternoon at the mall looking for Christmas gifts for our kids. It was great to be a couple and to actually walk the mall…the whole mall (I’m sure I haven’t done that since high school) without someone saying, “Oooooooo, can I have that?!” every 10 1/2 steps. We even got to have a relaxing dinner.  We needed it and it was great.

During dinner we chatted about a lot of things but certainly our family and what it’s become…you see I was struggling hard with Christmas shopping and knowing we won’t have Declan to shop for any more (that grave stuff just isn’t the same) and well, I was upset. As I tried to hold back my tears (I failed miserably), Stan told me something that was both painful and strangely comforting. He said, ‘You know, Declan is already all he’ll ever be’. Ouch. Of course I cried a little bit more but then I realized, it’s true.  And the mental comparing of an event, a moment, a shopping experience…whatever…does nothing but make me feel badly for something neither Declan nor I had control over…his death. Sure he won’t get to do a lot of things I imagined for him but I can’t let that rule my thoughts of him or in all fairness, my other boys.  We didn’t choose this, it chose us.

I’ve been wrestling with this concept for a few days and while I understand it and think it makes sense; it doesnt make it a shred easier to bear.   I realized tonight my brain is having issues shutting off the piece of our brains that projects, you know the wishes and dreams area…whether it’s for our kids or the important people in our lives.  Here…try it, think about someone you have projected plans for…one of your kids, heck your dog even (not that I would ever compare my son to a dog…I LOVE dogs btw…but I was single for a long time, so kid references escaped me)…now erase those plans from your mind. That’s it….Erase ’em. Not some of them…all of them. It’s almost impossible. Its almost impossible because we plan. But imagine the peace in knowing that person was all they were going to be….it’s a freeing concept and yet not so much in the same breath.

I’m still trying to figure it out…I’m sure I will be for many, many, many more moons.

A beautiful night

Tonight was the last meeting of our Grief Share group.  It ended with a beautiful ceremony where we all lit candles praying for the ones we have lost and each other as we closed the session.  While we missed a few of the sessions for one reason or another, I can’t believe the 13 weeks is up already.

Different from the other grief  groups we are attending, Grief Share holds a weekly (vs monthly) meeting.  I firmly believe it has given us the tools which have helped us get to this point.  It’s not like we have a choice or anything but grief is confusing and knows no limits.  To gain a better understanding of grief and how it impacts each person has made a difference because that’s just it, it is different from person to person.  Which, to be completely candid, is rough and has tested the limits of our marriage.  Although our grief is not altogether totally different, it is different nevertheless; but we’re still standing side by side.  Truthfully, some days we’re not hand in hand (or even shoulder to shoulder) but we’re still standing near each other and that’s something.

Our group has helped us see how our grief can be a shared experience while still being intensely personal.  They have helped us lay the cornerstones of the foundation upon which we’ll continue to build our path through the grief.  I don’t think it would have been the same experience without the same loving group of friends.  We will carry this experience in our hearts and I know I will see the faces of my new friends and the experiences they taught us as we navigate this journey.  God Bless you friends, we will always pray for you and your family member(s) because you are now part of our family too.

The good guilt

Today is Brady’s weekly Tae Kwon Do class provided to our boys by the amazing folks at Action Martial Arts in Ashburn (truly they are amazing…if you’re local and considering Tae Kwon Do, check them out).

So we’re at home beforehand and he asks me if I’m going to drive him.  This has become a customary question on Pre-school and Tae Kwon Do days.  Honestly, given the true choice, I’d take him every day but some days I need to take care of business for the non-profit.  This morning was no exception, so when Brady came in to ask me if I was taking him, I steeled my resolve to say no.   Because let’s face it…we Mom’s, we want to be there for this type of stuff; and certainly for me these days, this feeling is a bit heightened.  Shocker, eh? 😉 I told him Mommy was sorry but she couldn’t take him today.  I was so proud of him…he didn’t cry.  He took it like a man and simply said, “But all the other Mommies will be there.”

After I grabbed my coat and we loaded up in the car…I turned on the radio and was treated to a serenade.  It was the Bruno Mars song, ‘Just the way you are’.  He looked at me so sweetly as he sang these words…

‘When I see your face
There’s not a thing that I would change
Cause you’re amazing
Just the way you are
And when you smile,
The whole world stops and stares for awhile
Cause girl you’re amazing
Just the way you are’

He was smiling and singing…and he said it was just for me.

I mean, yes, life has its rough moments for us right now but really, does it get any better than that?  :)

Grief counseling and a sign

As I think I’ve mentioned, Stan and I are both attending a grief counseling course as well as attending two different grief sessions for parents who have lost a child/children (The Compassionate Friends) and then one for parents who have lost a child/children to cancer (through the Life with Cancer Center in Fairfax).  We are trying to understand the process we’re going through…and it is a process…as well as what our boys are dealing with.  Their experience is different than ours and they grieve differently, we are trying to gain a better understanding so we can best help them.

Tonight I went to The Compassionate Friends meeting (Stan was unable to go).  I was looking forward to the meeting because last month they told us about a special memorial ceremony held each year in December.  One of the parents generously brings in ornaments she has crafted and each person is given an ornament to place on the tree as a memorial to their child.  The ornaments were placed on the table and we were asked to pick one.  There were 5 different types…my eye went immediately to the one with the filagree heart.  I looked at a few of them and picked the one I felt was perfect…you know you all do it, given the opportunity to look at a few you always pick the one you feel is the best. I love ornaments and definitely ones that remind me of a special occasion or event.  I KNEW this ornament was going to be a treasured ornament for me, so I chose wisely.

After we selected our ornaments, we each lit a candle to hold in memory of our child.  Once our candles were lit, a song was played.  It was beautiful and was really speaking to me when I looked down at my ornament through tear filled eyes and thought…’Is that a shadow on my ornament?’  I moved my candle…nope.  I then used the candle to light my ornament’s face better.  Nope, no shadow…the ornament is made of wood and somehow I didn’t notice the triangular dark shape through the middle of the ornament’s wood.  I’ll post the picture below but I wanted to give you some more insight into my thought process after this realization. First I thought, ‘Great going…how could you miss that?’  I mean was I so enamoured with thought of the heart that I completely didn’t see the mark?  How could I pick this one for my perfect ornament?  Oh great another disappointment…one I’ll get to live over and over again because of course I’ll keep the ornament because it is special.

And then it hit me…I don’t remember seeing the mark because all I originally was focused on was the heart and how much I love Declan.  The heart just spoke to me, I knew I wanted one with the heart on it (and there were several to choose from).  At first I thought the mark appeared after I picked it…you know Divine Intervention or maybe even Declan giving me a sign…I doubt that’s how it works but hey, the thought crossed my mind.  Then as I looked at the ornament more and wondered how I could have missed it, I saw the whole ornament for the first time.  The mark is pierced right through the heart, just like my heart is pierced with the pain of loosing Declan.  But there is more to the ornament, it contains the word ‘Believe’.  And while my heart is broken at loosing Declan, I truly believe I will see him again and that he is with me in all I do.  In that moment, my marred ornament became one of my most treasured Christmas ornaments.  It is the perfect representation of what it’s like…the terrible pain which pierces my heart every day but the warmth and comfort that comes from believing I will hold my baby again.  That he’s watching over me and the love bond we have is not and cannot be broken.

I love you baby…and I love my new ornament.

I put it next to your baby’s first Christmas ornament from last year and your handprint ornament that RahRah did with you last January.

Your sweet little hand…I’ve spent a lot of time starring at it and remembering how good it felt when you held my finger.  True joy.  :)