I finally have a minute to sit down and truly reflect on these days of last year, the early hours of the 18th and our life together sweet baby. I think life has positioned itself well since August 9th to help us (me) be distracted away from thoughts surrounding your final days here. I so desperately wanted to pour over each day in my mind…the last days I was able to hold and touch you. (Interestingly, the images I have of you are not on your sickest days…you’d think they’d be engrained in my head…they are there but it’s your beautiful face and sweet smile I see when I think of you. As it should be.)

I’m sitting in our quiet house (that’s only because it’s the middle of the night…it’s louder than a train station in here normally!) listening to the songs that played over and over again so many times for you in the hospital through the monitor in Cole’s room (the room you were supposed to share with him) the same ones we listened to non-stop in your final days. In so many ways I wish I was back there with you now but I know that is the selfish me talking because I miss the feel of you in my arms. If I had known how badly my arms would ache to hold you to me, I would have stayed so much longer. I would have been asked to give you up, been told that it was time. I guess now I know the time didn’t matter, it was never going to be enough. (It never is with our kids, is it?) In the excruciating pain of your death, we were actually given a gift we had not had in a long time…the ability to hold you, free of tubes. To cuddle you without fear of pulling a line. It felt so good, which increased the heartache even more but you were also at peace.

I remember leaving the PICU and getting to the car, thinking I’d forgotten my phone. I ran back up to check the room…but that was not it. I think it was the piece of me that thought, no…no…please, it can’t be real, he’s supposed to go with me…I’m supposed to protect him and help him through this…me and my little buddy. The final walk through the halls that had become a second home to us was so lonely…my arms were empty, you were gone.

As we left the hospital, heart broken and well, just broken. I will never forget the torrential downpour outside. It was terrible. I mean here we are grief stricken and we kind of looked at each other like, really? Really, you’re going to throw this on us too? So many times I’ve thought of that night and I think the rain was not rain at all but the tears of the children who went before Declan, crying for the loss of yet another young life; coupled with the collective tears shed by the Mommy’s, Daddy’s, brothers, sisters and family members left behind.

Those last days were torturous. You almost slipped away so many times and it was horrific to watch your breathing slow and heart rate drop wondering if this was it, the moment we would lose you. And then you would fight back…there was so much fight in you. I found myself wanting it to be over for you but knowing I wouldn’t be able to bear it…on my God, maybe I shouldn’t be sitting still thinking about you and how much I miss you. Watching you die was crushing. The most helpless feeling in the world, knowing you were leaving us…that the cancer had won and was taking you from us.

I think on some level Cole is sensing it too…he keeps crying out in his sleep and he rarely, if ever, does this for any sustained period of time. He was inconsolable enough that he’s now sleeping next to me, lying on the last blanket we held you in…the one I now sleep with every night. Maybe his little heart is remembering and crying out for his loss, the loss of his twin.

But then his cry is the reminder for me, the reminder of today. Yes, now is it the 18th…coming up on the time you took your last heartbreaking breath. I actually don’t mean reminder of the 18th but our mantra for this whole nightmare…we only have today. Stan and I were talking about last year the other night before I left for my trip. We were talking about the day we found out Declan would die, and Stan said he’d rather spend his time thinking of all the happy times…the day of his birth, the smiles, the joy he brought us. And he’s right. It’s easy to get caught up in missing him and he crushing pain in our hearts every day but in the end, what purpose does it serve? By keeping ourselves in the present with our boys and remembering the joys, not the trials of the past, is how we want to try to live.

The time just crossed over 2:20am, your official time of death. Damn. I am numb at the thought. Sweet Declan, please know we will try hard to keep your spirit alive….fight to save others from the place we find ourselves in. You are missed beyond measure. Thank you for all you’ve given me. I have been blessed by your presence in my life.

I’ve sat down to write thank you so many times and the paralyzing fear that ensues is horrible. I’m so afraid I’ll forget someone or some kindness that I’ve shied away from them (the Catholic guilt is killing me so you may get a thank you at some point in the future…2020 sound good?). The kindness that has been shown to my family is truly beyond words. The kindness shown to Declan…I will spend a lifetime of “pay it forwards” and won’t scratch the surface of a proper thank you. We have been Blessed.

There is one person in particular I feel the need to single out…my sister in law, Beth Collingwood. We (our family) spent time talking about the foundation we would start when Declan was better, to help families who found themselves in our unenviable shoes. As we all know, the “got better” part didn’t happen for Declan or our family. On some level the steel in our resolve was cemented in his death.

Before you have a child with cancer, St. Jude’s is the childhood cancer non-profit. Truth be told, there are thousands. When I reached out to the lead researcher for a study Declan was included in to ask her about fundraising efforts on their behalf and her thoughts on the best way to approach our foundation, I was taken aback by her response. It was an almost exasperated response along the lines of…there are too many foundations, can’t you just band together with another? In my mind I thought, did she forget Declan died? I mean how can I/we NOT start something and work tirelessly on it? Once again as our fog has lifted, I see what she means. There are a lot. Each has its own spin, I imagine based on their child’s experience or where they see lack in the childhood cancer world. They are ALL worthy. They are all born out of the love and heartbreak of family…even if your child has lived (and I can’t truly speak but I can image) there is a sense of the broken heart of it all, the childhood days lost to hospital stays and IV’s and surgeries and hair loss and uncontrolled vomiting and invasive procedures and clinical terms and separation from family and friends and well you get the drift. I think we all suffer from the heartbreak of what could have been. What could have been a life or what could have been a childhood…heartbreaking loss, all the same.

So we began work on our non-profit, Journey 4 A Cure. Journey 4 A Cure because while Declan’s Journey is the reason we began, our Journey now continues for all kids (our own included). Beth, Stan and I began the work and it quickly became Beth and I due to Stan’s work schedule. And here is where the thank you truly begins…

Beth and I worked on this together but I would be lying if I said I was responsible for its current state. For me, you can imagine the desperation for the ‘want’ of this but it has been hard to put it into action. There were days I would begin working on some piece and would get lost in the world of another child battling or my own thoughts or just muscling through the depression of burying a child. And to that end, Beth has shouldered J4AC. She has sweated out the finer details of obtaining official 501(c)(3) status and establishing the legal entity. She has laid a solid foundation for J4AC. It is on her tireless hours, her miraculously timely and poignant posts on Facebook (yes, that’s Beth…not me; ok a few are me but the lion’s share is Beth.) Her ability to find and establish relationships which will get funds in the hands of the researchers making strides towards a cure. Her ability to create projects which have immediate and lasting impact on the lives of children battling cancer today. She is the driving force and it is on her back that success has been born.

I don’t say any of these words because she needs them…in fact, she is going to kill me when she reads them…but because you need to know. I need you to know. As much as I can I correct where I see people directing a sentiment at me because they think I penned it, I want people to know how amazing and tireless Beth’s efforts are towards the success of J4AC…her nephew’s cause. She has already done so much good in the world of cancer through J4AC and has helped build the initial steps towards its success in fighting childhood cancer.

I wrote about my son’s experience with cancer and how it impacted his life, and our collective family life; but Beth has created something so far beyond words…she has impacted and continues to impact lives on a daily basis. A change has occurred because lives have been impacted for the better. Beth will tell you Journey 4 A Cure is a family thing and it is, it began with our family’s experience, but it has grown to impact others based on the tireless hard work of Beth.

I also figured something out the other day and my heart broke into a thousand pieces over it. Beth learned her nephew was going to die on her birthday last year. I completely forgot it was her birthday. I can’t imagine the pain that it caused her to learn this fact on such a special day in her life, a day to be celebrated.

Beth, I hope each birthday moving forward the pain you felt is replaced with the knowledge that all the work you did and are doing will help bring so many more children to their birthdays…those that might not have occurred without you. Thank you, Beth. I KNOW Declan is so proud of you. Oh yes, and Happy early Birthday (tomorrow).

Wouldn’t it be great to see a surge of votes on Beth’s birthday? A birthday shared with little Luke Hawley…what about for him and all he’s had to endure? Wouldn’t it be great to know your simple act of voting and asking a few extra people to vote alongside you could give a birthday to someone who might not have had that chance without you?

I just watched a beautiful sunrise where the clouds became illuminated with varying shades of orange and red. I am always awed by the natural beauty of the rising and setting sun. I find myself stopping whatever I am doing to enjoy them. They each give me a sense of all that is good and remind me no matter what is happening in my life, there is a new day or another one coming soon to begin again.

That’s the sense I (we) had last year about this time. We had returned from Declan’s radiation trip to Houston and barring a few chemo trips to the hospital, things were looking so wonderful. In fact, we would argue the best week in Declan’s treatment to that point occurred the week before he returned to the hospital for what would be the last time. We had such a sense that things were looking up. You see the idea of radiating your child’s brain (or any part for that matter) is insanely frightening and while we wouldn’t know the potential late term effects for years to come, we were pleased with how Declan seemed to respond during treatment. We were home, Declan was home…not our home away from home INOVA but our home, and all seemed great. We still had a long road of treatment ahead but everything seemed to be headed in the right direction.

I just looked up and out the window are about a dozen dragonflies circling around…Declan and his friends have come to say hi. Hi Baby!

We were working into a home routine and it felt good…it felt right. It was the mundane of life occurring that we dreamed of and cherished while in the hospital. Declan was sitting in his highchair alongside his brother enjoying a “meal”, he was laughing and playing, he was enjoying wagon rides…outside!*…it was normal (minus the g-tube and round the clock meds but that had also become ‘normal’ at that point too). It was normal and it felt so amazing…hopeful, like a new sun rising.

The days that followed were some of the worst we had had to date, little did we know how bad it would ultimately get. Watching helpless as your child is obviously uncomfortable and not being able to console him is torturous; watching the s l o w, ticking clock in the surgery waiting room waiting to learn the fate of the latest brain surgery…ugh, brain surgery on your baby (you think tubes are bad?…I did, it pales in comparison); the hours of gentle rocking to help comfort our sweet boy after surgery, struggling ourselves to remain awake from the sleepless overnight wait while Declan was in surgery; the terrible recognition that something was wrong again and the ensuing stat CT scan in the middle of the night and additional overnight emergency brain surgery to alleviate the believed cause…more s l o w, ticking clock; all the while not understanding the real source was silently growing just outside the view of the head CT/MRI’s, still believing Declan would overcome…as he had so many times before. Not realizing we were unknowingly watching the sun set on his glorious life.

I look back now and cannot believe how much occurred in the final days leading up to the fateful MRI. I imagine there were many times looking from the outside in it seemed the steps we were taking were beyond imaginable and horrific…and believe me, they are…but as you walk this path, it strangely just become the steps you take to help save your child. What else do you do when those are the only options available to you? I would do anything to take every millisecond of discomfort from every child battling cancer (or any affliction for that matter, medical or born of man). The innocence stolen is immeasurable.

Even through the body-rattling roller coaster (you know the kind) we were on with Declan in the final week, the sun was still rising…the sunrise of his life. We were confident the brightness of his life would burn through the latest cloud crossing his path; not realizing the storm clouds were lurking over the horizon, gaining strength.

*I will add pictures of these events when I can…can’t get it to work right now. Operator error, for sure.

…I just walked into Cole’s room to replace a runaway ‘binkie’ and comfort his sleepy mission to locate it. As I walked into his room I hear the music that has played for all our boys as they have fallen asleep, and while they have slept; the music has been a friend to me on so many sleepless nights helping to comfort the unhappy Carmical baby boy and his sleepy Mommy. The music has spoken to me on so many levels and I truly enjoy the songs. I see and feel each of my boys when I hear the words; remembering the smells, the snuggles, my awesomely comfy glider at home, the not very comfy gliders at the various hospital, the rhythmic sounds of their soft breath as they fall into deep sleep…so many wonderful memories. Once again though, I am reminded of how much has changed.

The music was mid-song in Somewhere Over the Rainbow, ‘….And the dreams that you dare to dream, really do come true.’ Ha, not really I thought. Not for my Declan. But just as swiftly as that recurrent painful thought came into my mind, another truth rang through…my dreams for Declan are not the ones most parents have for their children, well at least not any more. My dreams for Declan are about making a change. So cliche, I know but true. I know they are true because the thoughts come to me in the moments when I should be screaming or having a massive pity party or a whale of a good cry. Because of the intesity of the thought swings, they stick with me and steel my resolve.

I know there so many unrealized dreams for our kids over the rainbow but I also know I share my dream with so many others and I feel this dream will come true. I mean dare to dream it…a world with no more childhood cancer.

‘….and the dreams that you dare to dream, really do come true.’

Like the changing tides, I cannot avoid you. I wanted to but here you are nevertheless. Clearly I can’t avoid any month in a year or day on the calendar. It is the curse of time because while it marches forward, it also retraces it steps. Covering the same ground over and over again. Sure the landscape will look different from year to year but the days and months cannot be avoided.

There is so much tied to August of last year. So much I will cherish forever…like your first wagon ride outside our home with no hospital walls or ceilings to block the sunshine from shining on your face. The day you so beautifully smiled up to the Heavens. (Gosh I still wonder what you knew) And then there are the dark days, so much I would give anything to never think of again…the final days, hours, minutes and seconds with you. Even those I’m not really willing to give up because you were still here.

I can feel the emotions building in me…I’m not really sure what to do with all of them. There is so much to still process. So much I know will never make sense. So many broken pieces to still pick-up. There are days when I feel stronger, where my heart feels more connected to you than broken over losing you…and then I look up and see tears flowing down your oldest brothers cheeks and the pain on his face as he silently tries to eat his lunch; crying because he misses you so much and it all comes flooding in. The pain, the heartbreak, the confusion, the helplessness, the whole of it…missing you (and our cuddles).

So August, go easy on us. We’re still in uncharted waters here…feeling very much like a rowboat floating in the vast ocean without a paddle to guide the way, hoping this part of the journey is not as bad as I think it will be.

We all have them. We have them for ourselves and once you have children, you have them for your kids. In fact, the dreams I have (had) for my kids are even more intense then the ones I have for myself. I sometimes wonder if the dreams I had for myself…mother of 4 boys AND twins. Am I selfishly being punished…I got what I had secretly prayed for. Did Declan suffer for my longing? Believe me, I “get” that this is an irrational thought process. That this is my brain trying desparately to make sense of what has happened to one of my children. But I wonder….

So back to the dreams. I love the beach. I mean, I absolutely love it. There isn’t a place on earth I have felt more centered than at the beach, especially the Outerbanks of North Carolina. Maybe it’s years of summer vacations I spent at the White House or the vacations with friends or the family vacations with our new families; whatever it is, I have always felt whole here. At peace. I dreamed of sharing this with my family, my children…my boys. There is something about an unrealized dream, especially one you can’t ever make come true. Oh sure, there are signs all around me…Declan showing me his presence. It is heartwarming. It’s crushing. I dreamed of sharing the beach with all of my boys…not 3 of my boys and the passing dragonfly (Did you know the story of the dragonfly? The extra set of wings they have are not theirs but are the angels who catch a ride from Heaven to visit loved ones…btw, lots of loved ones enjoying the beach with their families this week.) or the shooting star I saw while watching the moon rise (thanks Declan, I asked and you gave me a sign) or the dimes or well, you get the picture.

I didn’t dream of it this way. I didn’t dream of the crushing feeling coming across the bridge…the same bridge that brought such joy in the past. I didn’t dream of the overwhelming emotion which overtook me upon our first visit to the surf….watching Cole delight in the surf, laughing and running…because you weren’t there. My dream crushed by the cancer that took you. The beach was always the place I would enjoy with my boys….racing the waves, jumping the surf, learning to “surf” the waves. It was never going to be the place where I’ve been choking back crushing heartbreak to make sure my kids don’t see the searing pain in my heart because one of my kids has died.

I’ve been doing pretty good but today is particularly hard. I don’t know why but the emotions are fighting me today…wanting to let loose. So I here I sit, writing to you about my heartache in the hopes that I can get some of the pain out so I can return to the beach and/or pool with some semblance of composure and get back to the joy because there is also so much joy here. I love it…watching my boys laugh and explore new things. So I will go put you aside old blog and my broken heart and go back…go back to my boys and enjoy all their new discoveries and the signs from sweet Declan letting us know he’s here joining in the fun.

I miss you baby.

I’m traveling for business today and as is customary, I attempted to book my hotel room in conjunction with my co-workers. The hotel was sold out so I booked another…no biggie. I had the rental car so we drove to the first hotel and decided to check if a room had opened up; as luck would have it, one did! Yay, much less coordinating to do!

So I bid my co-worker fairwell and opened the door to my room…and the past because I just walked back into Houston. It didn’t even dawn on me this was a Residence Inn, the same place we called home for 6 weeks last summer. Maybe I wouldn’t have if the decor wasn’t identical to our rooms last year but it is. The same kitchen with the short fridge, the same desk, the same hunter green couch with gold and maroon stripes…same as the one we used to lay on with Declan and spend snuggle time together. Baby, you were everywhere! I could see your meds in the fridge, see your Daddy playing with you, spending time with your brothers, remembering the days and nights we spent there…praying what we were doing was curing, not harming you. Little did we know the battle we were fighting was taking a turn, a silent and deadly turn…

OMG, how can I stay here? I won’t make it. I can’t be here alone with all of these memories. Of course I can’t leave, well I mean I could but then I have to explain why and I don’t want to go through all that. Plus, am I going to run from this whenever it gets uncomfortable? No, of course not. So I’m trying hard to not feel sad but to think of the great times we had enjoying you last year. Remembering how much time we got to spend with you. I’m not sure how well I’ll sleep tonight because of this but I guess it’s just another step down the path. (Gosh I wish your Daddy was here with me.)

Brady was out back playing with the hose. He was spraying the windows while I was inside…I walked over because I thought he was trying to get my attention. He wasn’t. He was being a boy. He was playing with the hose spraying water up in the air watching it, with those wondered eyes of a child, fall back to earth. As I was watching him a rainbow came over his face (multiple times) and, of course, I thought of you. I know the physics of it but I also knew it was you. You playing with your brother…and my heart was simultaneously warmed and heartbroken. So very delighted that you were playing with your brother, enjoying what every little boy and his brother should enjoy but so very heartbroken, for us both, that you weren’t actually by his side.

I miss you but thank you for letting me know you are enjoying your brothers.

My dear friend, Lora, who so lovingly took care of Declan and his Physical Therapy needs during his stay at INOVA, has written a beautiful note on her Facebook page about why we do what we do and why we’re asking for your votes.