So it happened today…

I struck up a conversation with a stranger and she was asking how old Cole was and when I told her, she said she had twin boys 2 months older…and I froze. I mean she probably had no idea because we kept chatting…I mean, I do know all the right questions to ask! ;)…but it killed me. I just couldn’t see the conversation beyond, ‘Me too!  Oh where is the your other son?  Er um… Ugh!

But I realized two things. While it may be difficult for me and the person I strike up the next conversation with…this is our new reality. I’m sure I’ll come up with the right words eventually. 

The thing I think I’m more ticked at myself about is missing the opportunity to spread awareness about pediatric cancer. I mean, we multiple Moms stick together (there is safety in numbers) and I know it would have resonated so I felt terribly guilty afterwards. 

My God this is so hard. It really is. But I am comforted to know he’s around. Today, I was having a particularly difficult afternoon while enjoying some silly time with the boys and spent some time looking skyward and chatting with Declan about how hard it is…not too long after that, a beautiful rainbow appeared…exactly where I was looking. It made me feel like Declan was saying, ‘it’s ok, I’m here and will be.’

I’m still heartbroken but feeling better about my baby, how much we miss each other and knowing it’s ok to have fun with my boys. I’m not betraying Declan. In fact, it’s probably the opposite. Closing up and retreating only takes away from
Declan’s legacy of love. 

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Declan Forever

 

Yesterday we braved the heat and took six of the grandkids to a long promised visit to King’s Dominion — boy was it hot!! My sweet daughter-in-law Cathie volunteered to accompany me and went on many rides with the kids.  We decided to wear our Declan shirts for a variety of reasons, but mostly because Declan is never far from our hearts, minds and prayers.   I spent a good portion of the day while the kids were having fun ???? whirling, twirling and riding upside down, watching people and thinking about Declan.   I was asked a couple of times about our shirts and explained a little to a couple of people.   But mostly I explained that Declan lost his brave battle with cancer but our plan was to continue his fight and focus on pediatric cancer in memory of Declan.   As Sherri noted last week the amount of funding associated with pediatric cancer is appalling.   There are so many thoughts churning in our minds right now, amidst all the raw emotions of the past weeks — one thing I do know is that we have a passion for increasing awareness, helping families and changing the picture of funding for cancer research.   We pray research will lead to more knowledge about cures for the horrible disease of AT/RT.

People have given us strength over the past week.   The hundreds and hundreds that attended the viewing and funeral mass provided so much support.   The balloon release that started as an idea strand by a couple of wonderful people on Facebook turned into another amazing event that helped us maneuver a tough day.   The cards, messages, offers for support — I continue to be blown away by the number of people that were touched by Declan in his short life. Declan’s sweet smile fills my heart each day.   We hope you will continue to follow Declan’s Journey as our fight/plan of attack evolves!  

I’ll title this post with the salutation of one friend and add a poem sent by another, thanks to all :)

 

In life we loved you dearly,

in death we do the same.

It broke our hearts to lose you,

Your memories and love remain.

Though we cannot see you,

you are always at our side.

Our family chain is broken,

and nothing seems the same,

But as God calls us one by one,

the chain will link again.

A funny thing happened on the way to my pity party today…

…you.  I’m sorry son, it’s not you this time.  It’s the wonderful amazing “you’s” out there.  All you balloon launchin’ fools (fool in all it’s good sense, of course!).  You made our day amazing and bearable.  A day we will always remember for what it was, not what it wasn’t.

Sure it started at the cememtery and it was sad.  But then we came home and started blowing up balloons for the launch.  So I didn’t mention last night that Daddy and I rented a helium tank and bought a bunch of balloons for you.  Your Daddy never does anything for his babies small…and honoring you, well that’s a biggie today!

It was a delicious distraction.  So much of what we’re experiencing right now is mental so as I filled each balloon, I put some of my hurt in each one so it will float away.  Kind of not nice because they’re for you but I needed to do something…you understand, right? :) BTW, I would need a heck of a LOT more balloons to make a dent but I’m working with what I have. 😉

As we set out to the front yard for the launch, we were again met with an amazing group of people (a mix of friends, neighbors and again, strangers…btw, I hope you are not offended by the use of stranger but more on that for another post.)  out in the street to share in the experience.  It was amazing.  Truly a wonderful sight and a huge comfort to us.  We sang and laughed and enjoyed the day for what it was…the birthday of 2 beautiful boys, our boys.

Here’s the video we took…

But that wasn’t it, we checked Facebook after the festivities for Cole were over and there were hundreds of posts and pictures of folks launching balloons in your honor and to raise awareness for Pediatric Cancer.  It was truly awe inspiring and humbling.  But then again, so were you.  Happy Birthday Declan and Cole!  It was truly a day to remember…a day I was sure I’d always want to half forget.

Thank you from the bottom of my heart.

(BTW, I’m trying to post more pics of Cole’s birthday but I’m challenged and my iPhone is not cooperating.  I really wanted to post some of his cake…it was amazing and lovingly made by G. S. B. Cakes!

But there was one in particular I wanted to share because it let me know you were here today.  The one of me, Cole and Sophie the Giraffe…Cole was never particularly interested in Sophie like you were, until today.  He held onto her and enjoyed gnawing on her for the longest I’ve ever seen.  I knew it was you, letting me know you were here.  Thanks, buddy.)

Oh Declan, today was so hard

We went shopping for 1st birthday party supplies.  It was such a bittersweet adventure.  How could I not imagine you in the silly little “I’m 1″ hat? I’ve been holding it together pretty good for the last day but it was just too much.  I cried, right there by the party hats.  I really tried shut it off for Will and Brady but it was a lost cause because the emotions are too raw.  I’m sure you were proud of Will, he tried hard to comfort to me…kind of like he was to you so many times.

Of course you know we are excited for Cole but it was heartbreaking to pick out party supplies knowing you will not be here to celebrate with us.  Of course, your crazy Mommy (supported by your equally crazy and loving Daddy) bought stuff we will bring to you tomorrow.  Oh God it hurts so bad to type those words because I know it means your grave. We just miss you so much.

As you did so many time while you were here, can you please help give me strength tomorrow? I truly don’t know how tomorrow is going to go.  I want to be brave and promise I’ll put on a good face for Cole (Brady and Will too) but it’s going to be so hard.  We love you so much and still find it hard to believe you are gone.  We’re just going to have to take it minute by minute tomorrow and really remember what you taught us…to live for today.

I’m going to bed now…I’ll talk to you in my prayers.

The Eulogy & Our Sincere Thanks

Stan and I wanted to say thank you to the many people who came out over the past two days to support our family.  We only wish we were able to spend more time with each of you.  If we were unable to speak to you, please know how much your presence meant to us.

We also want to thank those of you who have reached out to us over Facebook, you will never know how much the words of a person unknown to us have comforted us.

We have again been amazed at the outpouring of support and to learn from countless people how much our son meant to you.  We have been blessed beyond belief.

We wanted those who were unable to attend to hear the words we wrote for Declan.  This is not the end of Declan’s Journey, only a stop off.  We plan to continue and our posts will continue again soon.  So I’ll leave you now with our heartfelt thanks and our words for Declan.  I’ll be back again soon.

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Our Dearest Declan,

Your Daddy and I hoped and prayed this day would not come.  Please know how much we prayed.  We knew from the very beginning you had an uphill battle but we also knew we had to do everything we could to give you the opportunity to live a long life…an opportunity for your miracle.  In looking back, maybe just maybe, your miracle was granted on March 26th.  The day we were told the chemo “needed to work, it needed to work now, it needed to be magical”… a miracle.

And it worked. It worked so well at one point no tumors were noted in your MRI.  A true blessing; but in that blessing was something else…and more likely our miracle, it was time.  My dear sweet Declan, we were given 5 more months with you.  Oh and what a glorious 5 months it was.  We got to hold you, kiss you and love on you, countless more times than if we had chosen to listen to the doctor who had earlier told us to take you home and let you go to heaven.  We got to see you create and build bonds which we know will always be with your brothers. …Will reading books to you and of course, always getting you to smile when no one else could …of Brady kissing your port, gently rubbing your head and telling you it would all be ok …of you and Cole, curiously exploring each other’s faces and reaching out to touch each other.  True blessings.

So many times since your diagnosis, we wanted to be mad and to a certain degree we are…how could we not be?  But then we remember you and how courageously you fought …and your smile; your contagious smile.  It always reminded us that we could wallow in self pity, doubt and fear or we could enjoy what it was we have… today.  We were given a tremendous gift.  We were able to parent an amazing child, you, through your life.  I mean, truly be there to support your every move… something I think most Mom’s and Dad’s desire.

Certainly the circumstance is something we would have traded in an instant, we hated to see you hurt but even in those moments, we were able to comfort you and love on you.  Do you know you knew nothing but love your whole life?  Some hope for love but son, you truly had it …and not just from us.  You received it on so many levels …from your brothers, your grandparents, your au pair, aunts, uncles, cousins, friends, your nurses and doctors and yes, even strangers.  How wonderful it must have been to feel only love.

So we could be mad that you were taken from us so early but again, your Daddy and I are choosing how we behave.  And if we had any doubt about how we wanted to act, last night at your wake removed any.  My son, your life was not in vain and albeit short, it was filled with so much more than we ever could have imagined for you.  Your little life touched more lives than we will probably ever know.  Son, you made a difference.  Your ability to smile in the face of horrible pain and months of being away from the family that loved you so, made people (including us) stop and reflect on their lives.  To look at the world around us, see all the blessings we have been given and maybe for the first time, really and truly appreciate them.  YOU did this.  You reminded parents what a gift it is to be allowed to be a Mommy or a Daddy.  You helped us all slow down and appreciate the little things in life …like the smile of a little boy from Ashburn …and to remember no matter how bad anything in our life seems, if you keep a smile on your face, you can do anything, be anything …even impact a world.  We are so grateful to you for all you taught us.  We are so proud of you and to be your parents.

You should know we will not let today be the end of your journey, we plan to work tirelessly towards a day when no Mommy or Daddy or Brother has to stand by a coffin and say good-bye to their sweet baby or brother.  We will certainly miss you (oh God how we’ll miss you) but your light will shine bright in us and in the countless others who remember and were touched by sweet Declan’s smile.

We love you forever, Declan.

So, where to from here?

We are blessed, I know that — we have amazing friends, neighbors and a wonderful family — beginning with our siblings and their families, aunts, uncles, nieces, nephews, cousins to my four beautiful children — Beth&Sam, Stan&Sherri, Danny& Cathie, Jenny&Mike and the blessing of our 13 grandchildren — Kaylob, Sammy, Will, Lucas, Hunter, Devan, Cailyn, Kane, Drew, Molly, Brady, Declan and Cole.

We are blessed to have been part of this past year with Declan. We moved back from NM and bought a house in VA only a few short weeks before the twins were born. Stan and Sherri graciously opened their home to us while we waited for our house to be delivered. Although they were happy for the help in those first months after Declan and Cole were born (not sure they wanted all the advice that came with the help :) — the gift of those months was to us and not to them.  The memories of this past year will be with me forever — the joys of holding and caring for Declan and Cole from the very beginning.   So many memories –coming home from work to those joyful babies, helping with those middle of the night feedings — the groggy laughs Judy and I shared with Stan and Sherri at 2AM, watching all the boys — Will, Brady, Declan and Cole grow and change, their tolerance of my many songs, Declan‘s first belly laugh, his smiles, he was so full of smiles and laughter. How do I keep those good times, smiles and memories close to my heart without all the sadness that goes with them? God has a plan I tell myself. 

We are blessed to have had some very joyful days over the past 5 months since Declan was diagnosed. With all the lows, there were the highs — Declan’s good days — his smiles, how Will could make him laugh just by saying his name (and we all tried to imitate Will and get that same laugh from saying “Da, Da, Da, Declan“).  Declan’s joy when all the boys were visiting — his interaction with Brady and his pensive looks at Cole when he would chatter away. The memory of seeing Declan in Houston listening in amazement to him squeezing his giraffe Sophie — he was so proud of himself when he could make her squeak using both hands. How cute it was when Declan would light up when a female walked in the room, he flirted with all of them — his eyes and smile would light the room. Our daughter Beth, our research specialist, was beside herself when she was told it was AT/RT but I knew it would be okay — I had faith it would be okay.  How do we maintain our faith and our determination to help other families dealing with this horrible disease? God has a plan I tell myself.

We are blessed, to have had Declan’s story touch so many people and to have received the most amazing support from so many — friends, neighbors, family and strangers. Even today, the deeds, messages, prayers, songs that uplift us when we are in this abyss of misery — that support has been the mortar that has kept us from falling apart on so many days and continues to uplift us now. One said that you could see the beauty of God’s face in Declan’s eyes — those beautiful eyes. How we insure that these people know how much their support and meant and pay it forward? God has a plan I tell myself. We are blessed by Sherri and Stan, watching them weather this storm with amazing grace and fortitude despite the torture of their hearts. Watching them with determination gracefully demand and be the best possible advocates for their child in the worst of circumstances — what they learned about AT/RT and everything that comes with it was mind-boggling. My heart aches for Sherri, Stan, Will, Brady & Cole. How do we help them heal and navigate this quaqmire of emotions now and in the weeks, months, years to come? God has a plan I tell myself.

So where to for now, I think we are blessed to have had Declan for even so short a time.   Declan was premature so I know that it would have been easy to have lost him then and never have had that all to short a time with him.  So for now I tell myself that we will have to hang onto that — the fact that even though his time was short, the gift of Declan was huge. Hang on to the blessings we have, the memories, the gift of Declan’s goodness and smiles, the gift of our family and the tremendous support by so many people. Hang on to the positives in this journey. I know Sherri will have much more to say — there is so much more for her to say and I think that is part of God’s plan that will help us heal.

Matthew 5:4 Blessed are those who mourn, for they will be comforted.

Did I forget to mention?

….our boy is a fighter.

Based on the scans, everyone expected Declan’s time would be short once he came off the ventilator. Stan and I prepared ourselves mentally (although we know it is not really possible), positioned ourselves on either side of Declan (on the bed the staff so lovingly set up for us) and said ok….that was a little over 26 hours ago. True to form and par for his treatment course, Declan is doing it his way. I’m not sure why we expected less this time around. :)

As has been the case all along, Declan knows what’s best and I think, aside from being a courageous fighter, he knew we needed this time with him. Time to love on him, hold him and tell him what a better place our life is for having been given the privilege of being his parents.  

While our miracle isn’t what I thought or hoped and prayed for…it has been a true miracle to watch our tiny baby give so much to so many with the grace and poise he showed during these past 6 months. Oh yes…and that great, big, beautiful, Declan smile. 

As I sit here holding him, I am devastatingly sad for what we are loosing but so grateful for ever second we enjoyed with this angel and the life’s lessons I will carry throughout my life because on my son, Declan Black Carmical. 

p.s. To God…If you’re game, we’re up for a great big miracle about now. :)

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